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Over the years, I have tried many approaches to educating patients as to how to safely surf the Internet for health information.
Overall, the .edu, .gov and .org websites are excellent sources of reliable evidence-based health information.
Dr. Cary Presant outlines how patients can navigate safe passage through thousands of tempting but not always reliable sites by sticking to ones that are sponsored by the federal government, national nonprofit healthcare organizations or universities.
Sites developed by a major medical association, patient advocacy group, or clinicians are generally more reputable and up to date.
At least one medical professional serving on a medical advisory board (MAB), which one MUST be a board-certified allergist.
DO believe, and plan to share, only information found on credible health websites.
Some doctors just don't want to work with empowered patients. They can't be bothered, or they are intimidated. Mary Shomon, the About.com Guide to Thyroid, reported that a doctor she used to see wrote "petite papier" (meaning "little paper" in French) on some patient records. The notation referred to the fact that Mary did much of her own research, and would compile questions ahead of visiting her doctor.
Agreed.
I also agree (as you know) with the assertion that our FREEDOM from the fetters of sponsorship or medical advisorship on an official basis means that we can be extremely frank.
It also means that there is sometimes quite spirited debate about the merits of alternative/cutting edge research, including whether or not some things are DIY territory.
I'm beyond proud of FAS for being the force behind the shift toward Section 504 for LTFA, and for being home to several people who have said "No. I'm NOT going to go away. I'm going to win, and if I burn bridges so be it, because this is WRONG." I am in awe of the fortitude that it takes to pursue due process or court action with a school (or other organization) when it is so much easier to just walk away.
I'm also beyond proud that our community has been one of the first to support and sponsor individual accommodations even within the community, and while that has not been without growing pains (to say the least)-- it has left us with a position that is flexible and understanding. Some members do NOT need to have kids isolated from casual contact with their allergens, and some of us DO pursue desensitization (even though it's still quite controversial), and that is okay.
It's largely okay because while we can DEBATE that stuff here, we also don't adhere to a SINGLE party line about management, the way a single allergist, no matter how current or responsive, might well do.
I've learned so much from y'all. You make me THINK deeply, and you make me face things about this journey that I don't always want to look at-- but I always seem to wind up in a better place for having done that. Always.
:heart:
Doesn't the tagline what it's really like to live with food allergies say it all? It blows. The lower your threshold, the greater the number of ubiquitous, common allergens, the earlier anaphylaxis hits, the more it blows.
Conferences accomplish a lot of that already, IMO. Docs share info from them through social media. Still, I don't know how much there is to report, and even there support groups comprised of patients are the nexus connecting the medical with legal to balance out life's necessities. Most docs get to punch out on food allergies at 5:00 pm. I can't imagine they want to spend more time on work-unpaid and with patients.
If anything I would want board certified allergists to start regulating EMS response and training. THAT is where they can make an IMMENSE difference NOW that has a direct net positive impact on patient survival rate, treatment. Something that we as patients can't really do as we learned from the FARE webinar on epinephrine in EMS. It's a cluster fudge patchwork run by EMT basics under the direction of a regional MD that signs off on what meds they can carry and administer on who.
Easily half our medical issue is actually legal because the majority of LTFA are younger making education access a huge issue. This isn't a Gen X or above crisis. The result are allergists (and by extension or in conjunction with psychologists) who don't stay in their lane no matter how much worse they make the road for us. If a board certified allergist is required so should a advocacy liaison from the state's NDRN office to offset the legal void allergists try to fill.
Kids With Food Allergies (KFA), a division of the Asthma and Allergy Foundation of America, hosted a webinar on December 1, 2015 called Current Topics in Food Allergy Law. Our webinar featured the Allergy Law Project.
As I contemplate the situation a few things converge – food allergy awareness week, whether I’m quick to discount lay advice online, and community generated parenting advice.
a friend has made some very cogent points about a concept floated in an ALP post where we discussed non-lawyers dispensing legal advice. She cautioned me that in law, medicine, and the like, we can’t discount the power of community information shared by informed individuals who have lived a given scenario.
Trust requires an intelligent judgement of trustworthiness. So those who want others’ trust have to do two things. First, they have to be trustworthy, which requires competence, honesty and reliability. Second, they have to provide intelligible evidence that they are trustworthy, enabling others to judge intelligently where they should place or refuse their trust.
Welie insists that the hallmark of professionalism is to be deserving of the trust placed in the professional by the vulnerable, dependent patient
Trust, then, on this first approximation, is accepted vulnerability to another’s possible but not expected ill will (or lack of good will) toward one
Therefore, in addition to the commitment to cultivating attitudes and behaviors that embody trustworthiness, a patient-based understanding of professionalism would also include the commitment to actually gaining a patient’s or family’s trust by learning, through individualized dialogue, the conditions that would win their justified trust, given their particular history and social situation.
I think many patients no longer feel that there is enough psychological safety to talk about internet issues with their docs ... too many are getting labeled difficult, negative notes are being put in medical records, sometimes the docs complain about those pts online, medical care can be impacted. The doc-pt relationship should be a psychologically safe place.
There is a certain trust involved when a pt tells a doc something in confidence. Once that trust is lost, it is really difficult to get back.
Patients are still going to go online, but many probably will choose not to talk about it with their docs. Online stuff may in fact be part of what influences their medical decision making, but many pts will just keep that to themselves rather than talking about it with their doc and risk that doc getting offended, annoyed, and/or angry. I used to be open about my thought process concerning medical decisions with my docs ... now I often don't let them fully in.
"Poet and Philosopher David Whyte on Anger, Forgiveness, and What Maturity Really Means"
[url]https://www.brainpickings.org/2015/05/15/david-whyte-consolations-anger-forgiveness-maturity/[/url]QuoteThe wounded self may be the part of us incapable of forgetting, and perhaps, not actually meant to forget, as if, like the foundational dynamics of the physiological immune system our psychological defenses must remember and organize against any future attacks — after all, the identity of the one who must forgive is actually founded on the very fact of having been wounded.
---
"Philosopher Martha Nussbaum on Anger, Forgiveness, the Emotional Machinery of Trust, and the Only Fruitful Response to Betrayal in Intimate Relationships"
[url]https://www.brainpickings.org/2016/05/03/martha-nussbaum-anger-and-forgiveness/[/url]QuoteTrust, by contrast, involves opening oneself to the possibility of betrayal, hence to a very deep form of harm. It means relaxing the self-protective strategies with which we usually go through life, attaching great importance to actions by the other over which one has little control.
What I believe is that something has changed. Many patients are not passive anymore. We connect with each other, we share our stories with one another, we build communities like this one at FAS.
I think that a lot of online allergists have good intentions ... guiding patients to official respected support groups ... trying to keep them away from bad internet info where anybody can say anything ... it's just that I don't see small groups like ours going away ... people are going to connect with those they feel a connection with ... I got something from this group that I didn't feel anywhere else.
Even though food allergy issues don't have a big impact on our life anymore, my mind keeps playing with certain topics ...
I adore that Six Biases paper by Trisha Greenhalgh ... remember all that google-bias hypothesis stuff, the "epistemic injustice", & this:QuoteHerein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients’ illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another [80–83]. Hence, EBM’s accumulating body of (explicit, research-based) knowledge and the (informal, tacit, and socially shared) knowledge actually being used by people managing their condition are developing separately rather than in dialogue with one another.
This. So much.
If I were an academic, this is the paper that I would have written ... I have experienced so much of what she wrote about. To me, this is where the exciting stuff is at ... that gap, the potential for better integrating the scientific literature and the unique knowledge that groups like ours hold.
This suggests that notions of credibility and legitimacy online are not fixed and can evolve depending on the constitution of a group. As forum members establish legitimacy and authority, they become part of a community. As such, they influence and are influenced by group norms (Smithson et al., 2011). In turn, the community constructs the definition of acceptable discourse and reinforces the authority of individual writers (Galegher et al., 1998). In order to explore these notions in relation to LTCs, it is necessary to give in-depth consideration to the nature of forum usage by specific communities and to examine how trust is determined and negotiated.
"We are not saying that correlation is causation" That's exactly what you're saying. Without evidence, I might add.
Food Allergies in America: A life threatening allergic reaction sends someone to the ER once every 3 minutes. robynobrien.com/food-allergies…
The potential of genetically engineered foods to cause allergic reactions is a big reason for opposition to these crops.
reference to O’Brien’s keynote address to a food allergy blogger conference in which she called on food allergy families to be the scaffolding and support we so desperately need.
Unfounded fears about GMOs and “toxins” won’t get us any closer to understanding food allergies. The last thing we need is misinformation and fear. Our support for each other should be grounded in science.
That happens because the TRUTH is most important.
Science is all about second, third, fourth, and fifth opinions. Evidence-based medicine needs to be, too, if it seeks better truth with greater efficiency. That's where I think that most medical practice still errs. It hopes for fewer human beings to be involved in the interests of "efficiency."
Hubris, that. Science is the most efficient truth-seeking mechanism that human beings have ever devised. And it REQUIRES multiple participants, because each of them comes at a problem with different biases, previous experience, etc. You can't skip that step and have it work.
Even if we're informed patients don't you think we're PITAs? Remember John the Internet EMT? The one who was probably a noob basic?
A place that it would be clear the docs would be free from liability concerns, free from concerns of violating ethical boundaries ....
Heard about this from @SusannahFox
[url]http://c3nproject.org/about-c3n-project[/url]QuoteThe Collaborative Chronic Care Network (or C3N Project) grew out of a realization that the system for chronic illness care isn't really workingQuoteUltimately, a C3N will be where patients, clinicians and researchers work together as co-designers in a learning, social production system for health that aims to transform the system of chronic illness care.
For me, Twitter is a free-wheeling space where people dance with ideas.
#whatifhc (which stands for “What if health care…?”) became a flashmob of dream-sharing, a pop-up forum for health care ideas, no matter how idealistic, grand, or granular.
Have you “Googled” something recently? The relative ease by which Internet users can find information has led some people to begin searching for, and encountering, information and advice regarding various medical illnesses and injuries, including children’s food allergies. It has also led to concern surrounding the issue of self-diagnosis.
They are smart, motivated and experienced patients with an impressive and up-to-date knowledge of the best sources, centres, treatments, research, and specialists for their condition.
Providers are in a position to utilize quality assessment tools and existing resources that facilitate referring patients to authoritative, commercial-free, patient-oriented medical information on the Internet.
The role Twitter plays in breaking down patient/provider barriers, disseminating and expanding the reach of healthcare information, widening social networks and co-creating a collaborative model of shared health information is one of the most exciting developments in social media.
Twitter has also facilitated the emergence of the “patient opinion leader”
There are few ethical guidelines on this, with opinions on both ends of the spectrum: “Some people say absolutely it should never be done; it’s a breach of privacy … But then many say it should be done as a matter of routine. It’s information that is in the public domain, and it may be information that is clinically relevant.”
nearly 70% of Australian doctors report written or verbal abuse by patients, and another 30% reporting physical aggression
Anonymous posts about doctors are gaining strength in a consumer-driven society where people rate doctors like they rate restaurants.
But patients have a great responsibility to be sympathetic to the unique and complex pressures that doctors face, and not hasten to impugn their motives.
This week’s article tackles a different question: How do you really know if your doctor, surgeon or hospital is good, bad or somewhere in between?
The Internet is invaluable.
I like doctor rating sites. These services keep doctors on their toes. If a doctor asks you to sign a legal document agreeing that you will not participate in one of these sites (I've heard that this is something that some doctors are doing now), walk away.
So listen to your gut. If it doesn't feel right, it probably isn't.
So - Tuli loses points for two things: refusing to talk to her patient's husband post surgery and then suing him when he shared his experience online.
examples of why we cannot trust doctor's ratings sites
trust that inner voice of yours to help you sense when something just does not seem right
Everyone, on all sides of the table, is doing their best to change how healthcare is delivered and received. Some are motivated by patient satisfaction scores and penalties, while others are motivated by study results which show that patient-provider partnerships and patient engagement increase quality of care and patient safety.
Staff asked misguided questions, skipped tests and left the emergency room doctor in a hallway for hours.
The good patient in me felt embarrassed that somehow I had failed the “test” and was now an unnecessary admission
Instead of feeling like a connected patient at the center of care, I felt processed.
While the rating sites are generally immune from libel claims, said Sandra Baron, executive director of the Media Law Resource Center in New York, individuals who post comments are not. In general for a doctor to win such a suit, she said, the statements made by the patient have to be shown to be false and to have hurt the doctor’s reputation.
doctors will not find satisfaction through the courts, but by using the Internet to their advantage — encouraging happy patients to write online reviews and trying to address the concerns of those who are not.
Conclusion In a nationally representative sample, higher patient satisfaction was associated with less emergency department use but with greater inpatient use, higher overall health care and prescription drug expenditures, and increased mortality.
Some have argued that measuring patient experience is a distraction.
A recent systematic review found that patient experience is usually positively associated with patient safety and clinical effectiveness across a range of diseases, populations and outcome measures.
Hospitals may not always see complaints as signs of support.
When patients are in the dark, they may complain generally about something they think went wrong with their care. When they are brought into the information loop, their complaints can become more specific and more helpful.
Emergency physician Brian Goldman, host of CBC’s White Coat, Black Art, wants to lift the cloud of shame when medical mistakes are made, so they can be openly discussed and not be repeated by other physicians.
Medical mistakes are now estimated to kill up to 440,000 people in U.S. hospitals each year, making preventable errors the third leading cause of death in America behind heart disease and cancer.
The difficulty physicians have in communicating with one another when something goes wrong is an important factor,” added Gallagher, who has been working on the issue for a decade.
Power dynamics, professional courtesy and a medical culture that shies away from confronting colleagues all play into the problem.
by making public comments concerning his abilities, I undermined the trust that patients have in their doctors.
Nearly four years ago, government inspectors investigating a complaint by retired Air Force Col. David Antoon threatened to cut off Cleveland Clinic from receiving Medicare payments after being stonewalled by hospital officials. The Vietnam combat veteran had accused the hospital of failing to fully investigate his charge that someone other than his authorized surgeon had performed prostate cancer surgery and left him gravely injured.
The late Wilbur Cohen, one of Medicare's chief architects, noted it wasn't a glitch that prevented the federal program from policing the practice of medicine, including its safety and quality. Rather, that was a design feature.
My mom said that what she really wanted was an apology. And the risk manager said “You know we can’t do that.” That quote changed my life.
The takeaway for families: Be an informed patient. Find out who is performing any surgeries or treatment, and ask questions about how it will be monitored, and what they will be checking for. “You have to be educated and learn as much as you can,” says Lenore. “I just trusted them completely. I knew nothing. I could have saved her life and that’s really sad.”
Adverse events and deaths due to medical errors are serious issues that need to be addressed. But inflating the incidence of these problems does nothing but further erode the already shaky confidence of the public in the medical profession.
And creating the impression that such events are totally preventable leads to unrealistic expectations and unachievable goals.
Today I need to spend some time addressing foundational reference points of her entire project, namely the idea that hundreds of thousands of Americans are dying due to physician incompetence.
The panel listed some of the new technologies that are changing the dynamic between the patient and the physician, and how the balance of power has shifted. This led to a discussion on how some doctors view the empowered, digitally savvy patient as a challenge to their authority and expertise.
Let’s face it. Health care is still about everyone except the patient. Most physicians still relate to patients using a paternalistic, physician-directed communication style where the clinician knows best, does most of the talking and makes all the decisions for the patient. Patients are not supposed to be engaged – rather they are supposed to be passive and compliant.
one kind of record has consistently remained off-limits—the doctor’s own notes
The program—called OpenNotes—has been testing, in three different medical settings, the idea of patients having access to their physician’s notes.
Don’t give them information in the privacy of their own homes that they aren’t equipped to deal with, or anything that might hurt their feelings.
I told him I was trying to find another oncologist for a second opinion. There were too many question marks. His reply to me makes me shudder to this day, “What you have is so rare, no one will know anymore about it than I do!”
Records in hand, I began to google every word I didn't understand to see if I could learn more.
If I had to pinpoint an exact moment when this patient advocacy mission began, that moment would be it.
Most news stories quoting risk statistics are talking about the relative reduction in risk, and that can make the benefits of a treatment look bigger than they really are.
an association between two things does not necessarily mean that one caused the other
relied on a single source or failed to disclose the conflicts of interest
From April 16, 2006, through May 30, 2013, a team of reviewers from HealthNewsReview.org, many of whom were physicians, evaluated the reporting by US news organizations on new medical treatments, tests, products, and procedures. After reviewing 1889 stories (approximately 43% newspaper articles, 30% wire or news services stories, 15% online pieces [including those by broadcast and magazine companies], and 12% network television stories), the reviewers graded most stories unsatisfactory on 5 of 10 review criteria: costs, benefits, harms, quality of the evidence, and comparison of the new approach with alternatives.
Association does not equal causation. “Prostate cancer mortality has declined by 30 percent since 1990, which must be due to PSA screening.” It’s tempting to make sweeping conclusions based on observational data.
Unaccountable is largely about health care transparency and how better public reporting of outcomes will create an environment in which bad surgeons like Hodad can no longer thrive.
to quote Stephen Sondheim, “Nice is different than good.”
There will still be occasions when getting the best treatment requires enduring a jerky, insensitive surgeon. We shouldn’t passively accept condescension and rudeness, but we must also remember that kindness and a good bedside manner don’t always tell the whole story. Tame the Raptor, but don’t lose his results.
And that, in turn, led to a dramatic shift at the Cleveland Clinic, where he vowed to incorporate empathy, kindness and compassion back into the clinic, in place of the “cut well, sew well, do well” mentality that previously dominated.
highlight some tools at your disposal to investigate media claims about health and nutrition. My goal is not to train a legion of armchair doctors. Rather, I hope to encourage readers to question the health claims they see in the media, and to seek the advice of qualified medical professionals where those claims appear to be unsupported.
Hacking Gmail w/ 92% success bit.ly/1ttlBzR >@ScienceDaily / How do you feel about those health apps now? #privacy #mhealth #HITsm
The attack works by getting a user to download a seemingly benign, but actually malicious, app, such as one for background wallpaper on a phone. Once that app is installed, the researchers are able to exploit a newly discovered public side channel -- the shared memory statistics of a process, which can be accessed without any privileges. (Shared memory is a common operating system feature to efficiently allow processes share data.)
It's estimated that 72 percent of patients get a majority of their health information online.
our responsibility as physicians has evolved from simply teaching patients about their health conditions to now include educating patients on where and how to find and identify reliable health information.
Recently, the National Patient Safety Foundation’s Lucian Leape Institute brought together 40 patient safety experts — health professionals, patients, advocates, and others — to develop recommendations for how best to engage patients and families in improving patient safety.
What Can Providers, Organizations, And Policy Makers Do To Encourage True Patient Engagement On A Broad Scale?
Did you know some doctors once had a hand signal to warn their colleagues about internet-using patients?
the internet can help spin conversations toward misinformation or toward enlightenment
In the spirit of using this blog as my outboard memory, I’ll post a link that was shared on Twitter by Karen, a fellow food-allergy mom:
Docs helping patients to surf the internet
The thread starts with a catalog of links to articles about how clinicians should guide people to credible health websites. Then it gets interesting:
One e-patient wants engagement, the other thinks it’s creepy. No wonder doctors are confused when it comes to their public voice.
Experts making smart decisions on your behalf but not necessarily explaining the decision-making process – or sometimes the decisions themselves – to you.
It seems unthinkable now that you would just hand your sick child over to a hospital and hope for the best. It’s worth remembering that only a few decades ago the norm in health care was just that. Parents weren’t welcome in children’s wards.
none of the changes was more profound than the evolution of the doctor-patient relationship
Phillip Lerner, the son of a Polish immigrant, came of age in an era when the doctor (almost always male) was king — the best and final arbiter in all medical matters. Patients could be patronized and even lied to, and the doctor could take it upon himself to accelerate the death of a terminally ill patient whom he deemed to be suffering excessively.
Like a parent who gives up hope of guiding an incorrigible teenager, doctors at times have heard the demand to stop being paternal as stop making recommendations at all.
The key for doctors is to understand that the information they offer is not commands, but rather guidance and teaching. They should be willing to say, “Well, your choices are A, B or C, but I would recommend B. But, whatever choice you make I will support you.”
At its heart, she says, her approach was about getting caregivers to shift their focus when interacting with patients, from completing tasks to having meaningful conversations that forge a personal connection and build trust.
Culture will always triumph over policy, because a culture of safety is the mindfulness by each individual to look for and eliminate risk. Policies and processes give us framework, but care is delivered by individuals
In Krautscheid’s view, her students were putting their relationships with doctors and senior nurses ahead of their responsibilities to their patients.
“How do we teach courage?” Krautscheid asks. “How do we teach backbone?”
“It’s easier just to go along and get along, and when you drill down on that through one-on-one interviews, what they tell you is, ‘I have to keep working with these people, and it seems to be part of the culture that this is OK,’” Krautscheid says.
Gomerblog.com is strictly a satirical and fake news blog site. All articles are fake
Myers continued, “I mean I thought my vast experience in handling over 150 delirium tremens patients in my career was worth something. Emily reading a few chapters in school quickly trumped that.”
All of this may sound familiar to patients whose opinions are considered not worth hearing because, after all, they’re only patients, so what could they know?
This is directly relevant to cases where a physician feels that their authority is challenged by a patient who thinks.
Williams points to whistleblowers as people who are almost always shunned, with up to one hundred percent of respondents who have engaged in whistleblowing experiencing shunning as a result.
Williams recognizes the human proclivity to ostracize as a way to enforce order and maintain control over subordinates. “Anthropologically this has been done for eons; burdensome members of groups are ostracized.
Do I value candor and integrity as an aspiring physician? Absolutely. But are those values worth the costs of alienating a patient, a residency director, or the powers that be who might impede my professional goals?
For the first time, I’m not so sure.
And given the constant pressure in academia to “publish or perish,” this bias could be more overt as researchers fear losing funding – even if a threat is never explicitly conveyed.
Regardless of the etiology, research bias and skewed results are real when medical companies fund studies on their products.
drug and device companies aspire to drive product sales, not produce unbiased research.
I could be totally wrong here, but I am curious if the results will influence VITAL (the authors seem to have a lot of Australian connections).
[url]http://www.allergenbureau.net/vital/vital[/url]QuoteThe VSEP is a collaboration between the Allergen Bureau, Food Allergy Research & Resource Program (FARRP) of the University of Nebraska & the Netherlands Organisation for Applied Scientific Research (TNO).
The study could impact advisory labeling.
The thing about FARRP is I keep seeing them push for less labeling.
For example:
sesame seed study.
Survey on Thresholds from FARE (page 4)
[url]http://allergy.hyperboards.com/action/view_topic/topic_id/17461[/url]
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New exemptions from Food Allergen Labeling
[url]http://www.regulations.gov/contentStreamer?objectId=090000648121e481&disposition=attachment&contentType=pdf[/url]
page 130 & 154
The two viewpoints of this ER visit end with one thing in common. Just as the providers were surprised by the patient's complaint, the patient and his wife were taken aback when the team that I was part of presented them with their doctors' point of view.
Sue spends a fortune on printer ink. Each visit she presents an inch of Internet printouts. She has seen four oncologists and half a dozen other doctors for “second” opinions. Each week there is a list of new minor or major questions and the rehash of prior decisions
it is the doctors responsibility, both for that patient, and other patients, and for the physician’s staff, to help that person get care elsewhere and to walk away.
You will have the opportunity to meet at least three more doctors while you are in the hospital. Do not expect them to be attentive or explain anything
Doctors have been told to speak more slowly and use less jargon when talking to patients because their explanations of illnesses and treatments are too often confusing.
asking the patient to repeat the information back to them
"Patients when facing key decisions about their treatment can't do this in seven-minute GP consultations," Redding said.
This is useful information, but you know what, it does not exist in the scientific literature.
Something has changed.
There is too much information for anybody to keep up anymore. This means that it is not an indictment of a doctor if a patient has seen an article that the doctor hasn't.
A young woman with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disease, became an empowered patient giving her doctor summaries of her symptoms, information about EDS from the Ehlers-Danlos National Foundation, NIH and medical journals. Instead of being uptight about a patient educating her, this doctor said, “I want to say thank you for teaching me all you have about EDS…it has made me look at the other EDS patients I have differently… I just want to say thank you.” The amazed patient thanked her back and, in her words, “we hugged it out.” (Wow!)
We went through many emotions and a few pediatricians. They undoubtedly thought I was just another tired mom who had to be exaggerating about how awful my baby’s sleeping was. Or, they thought it was behavioral and I needed to let him “cry it out” or use one of the many sleep training techniques.
I remember leaving one appointment in tears, vowing to find someone who would listen to, believe, and help us.
nothing has changed clinical practice more fundamentally than one recent innovation: the Internet. Its profound effects derive from the fact that while previous technologies have been fully under doctors' control, the Internet is equally in the hands of patients.
I hear people analyzing, criticizing, and surmising about this relationship quite a bit, and I don’t blame them. The relationship you have with your doctor is a critical one, and yet it is fraught with misunderstanding, disappointment, and distrust.
I plan to open my mind to the next generation of people getting healthy through technology.
“Despite the rhetoric of ‘nothing about me without me’, organisational approaches to involve people seldom move beyond tokenistic consultations, questionnaires, one-off projects or overly-bureaucratic structures with a seat for a lay representative. The engagement industry may gather data about patient views but seldom uses it to inform decisions.
Online patient discussion forums may not be the noble grassroots support groups that I once believed them to be, either.
In the announcement it reads “One thousand representatives from all health related fields: Top-level scientists, political leaders, CEOs from industry, representatives from civil society and foundations, executives from the healthcare systems, students and young professionals.” And their vision and goals start with: “Bring together all stakeholders on an equal level.”
But something or rather someone is missing here—what about patients? They’re not in the programme or on the advisory board.
Often, a misdiagnosis is the result of inadequate communication between patient and physician. The problem, says Wen: Doctors who rely on protocols and algorithms as the basis for a diagnosis, instead of listening to the patient.
"It's not 'doctor bad, patient good,' but a system that doesn't always allow providers to get a sense of the whole person," said Marisol Cifuentes, deputy director of Advancing Care Together at the University of Colorado department of family medicine.
Jobs’ tumor was felt to be curable with immediate surgery. Yet this brilliant inventor, who revolutionized modern technological society, refused the recommended surgical procedure. He chose herbal treatment instead.
With the vast majority of American physicians trained with almost brutal intensity to serve their patients above all else, it seems the skepticism they face is still disproportionate to their potential for failure. The pendulum has swung too far in the other direction from physician paternalism towards willful ignorance by patients.
I was there when he received the diagnosis from a physician eager to start chemotherapy that another physician later said surely would have killed him.
in the 2½ hours I was there one evening, no one washed their hands, no one shifted him, a hose from his breathing treatment dropped on the floor and before I could stop the nurse she reconnected it.
When we expressed concerns about the drug causing metabolic acidosis, the doctor got irritated and said, “I have been a pulmonologist for over 25 years and have treated many COPD patients with Diamox. You people need to stand back and let me do my job.”
If you do your research and still feel unsure, ask for a second opinion. And a third, if need be.
As Sir Robert Francis urges whistleblowers who have tried to raise the alarm over NHS standards to come forward, The Telegraph looks at some of their damning stories
Online research and connectivity became the norm as the power of the Internet began to be felt. In 2003, the Pew Research Center's Internet and American Life Project found, to the dismay of many physicians, that 80% of Internet users had sought medical information online.(27) A new type of patient advocate, the e-Patient, started to emerge, self-defined as a "breed of informed health consumers, using the Internet to gather information about a medical condition of particular interest to them."
a disruptive technology that would upend medicine by creating a community of self-reliant patients whose group wisdom contained more expertise than that of the physician
For patients, navigating the debate can be difficult because doctors, patient advocacy groups and manufacturers often endorse positions that are in their economic self-interest. Radiologists, who often own and use CT machines, for instance, often endorse their use; while gastroenterologists, who often own and use camera scopes, often favor their own methods. Patient groups often get financing from drug and device makers, or physician-specialty groups.
I was first ignored, then pressured to change my scientific opinion, and when I refused to do that, I was intimidated and ultimately terminated
I was very interested to learn that in 1999, Ms. Munoz Furlong received a $14,000.00 grant from The Peanut Foundation, which is the research arm of the American Peanut Council.
Here are the grant particulars:
The decision makers and parents should also be educated that bans do not work.
[url=http://www.regulations.gov]www.regulations.gov[/url]
Request of Comments and Information on Initiating a Risk Assessment for Establishing Food Allergen Thresholds
FDA-2012-N-0711-0053QuoteFARRP would assert that the FDA does not have compelling scientific data on the prevalence, severity and potency of other foods to consider any additions to the existing FALCPA list. In fact, if the three factors of prevalence, severity and potency are examined together, several of the existing foods may not belong on the list. Soybean allergy appears to be less prevalent than any of the others on the FALCPA list, soybean is not an especially potent allergenic food, and soybean has caused very few severe reactions. Much the same could be said for wheat allergy (not for celiac disease which does have higher prevalence). Crustacean shellfish allergy is very prevalent but the potency and severity of crustacean shellfish appear to be rather low. FARRP would encourage FDA to develop an algorithm based upon prevalence, severity and potency to determine which foods belong on the priority allergens list. The decisions should be based upon science. FARRP would note that ILSI-Europe is working on the development of an algorithm for possible use in the EU and FDA should monitor this ongoing activity. FARRP would further note that the U.S. does not really have good data on prevalence. This is also true on a worldwide basis (Rona et al., 2007), although the EU has funded the EuroPrevall project that should, when published, fill that gap for the EU. U.S. estimates are based mostly on telephone surveys (Sicherer et al., 1999; Sicherer et al., 2004; Sicherer et al., 2010). Telephone surveys are not supported by clinical confirmations. Thus, FARRP would encourage FDA to work with other federal agencies to obtain better estimates of the prevalence of various specific food allergies in the U.S. based upon unselected populations and clinical confirmations.
---------------------------
[url]http://www.foodallergy.org/about/leadership/advisors[/url]Quote
Steve Taylor, PhD
Professor, Department of Food Science and Technology
Director, Food Allergy Research and Resource Program
University of Nebraska-Lincoln
Lincoln, NE
FDA-2012-N-0711-0062 (GM)QuoteIn addition to our direct comments, we fully endorse comments submitted by the Food Allergy Research and Resource Program.
How nice it would be if, for once, companies didn't fight some additional regulations. It would be so nice if they said - you know, we support mandatory sesame labeling because we care about our customers and we are committed to their safety. No company likes complicated or excessive regulations, but requiring the labeling of sesame makes sense. Instead of fighting us, why not be true partners with us FA consumers?
I've said it before ... "The Top 8" is sounding more & more like "the Earth is flat".
Doctors have things they want to address, but patients have things they want to address.
And there should be an explicit negotiation about the agenda of the visit. Both parties should realize that there’s going to be a negotiation, and that means that neither party is going to be completely satisfied.
You can ask your staff to give all patients a Patient Agenda Form. This form asks patients to prioritize and record exactly what they want to discuss during the visit.
Patients need information that is often very different from the information that doctors think they need.
Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information.
Reports of scientific findings linger on the internet, even if they are later found to be erroneous. Because most non-scientists never read the primary, peer-reviewed journal article, it is possible to look at reports of science many months or years after a study, and never realize that the actual science was retracted!
The spread of misinformation through online social networks is becoming an increasingly worrying problem. Researchers have now modeled how such fictions and diffuse through those networks. They described details of their research and the taxonomy that could help those who run, regulate and use online social networks better understand how to slow or even prevent the spread of misinformation to the wider public.
Gomerblog.com is strictly a satirical and fake news blog site. All articles are fake
“Patient satisfaction appears to be directly related to increased mortality and morbidity,” said FDA spokesman Dr. Rachel Barthow.
if a doctor mentions weight loss to the patient and they get upset, guess what? Negative patient satisfaction survey
a doctor who spends less time with patients and less time thinking about their medical problems will lead to decreased wait times
“I have been working as a nurse for 14 years and every day I come to work clueless, just faking it,” Jenny said. “It was such a relief tonight because as soon as I entered the room, I was directed on nursing care by a well informed family member in the room.”
Jenny was floored by this family member’s vast knowledge
doctors “prioritize our responsibilities as shepherds of scarce social resources to the same extent that we’ve historically prioritized our responsibilities for providing benefit to our specific patients.”
The emerging realities of health care in the U.S. are rendering patient engagement imperative
What it did show was some polyps that had a 50 percent chance of becoming malignant colon cancer in the next ten years. I was shocked. If I had waited until I was 50 to start screening, I could have missed my cure window. The uneasiness about screening guidelines began to sink in.
connecting with and understanding a patient requires the doctor to appreciate their unique perspective. This unique perspective is expressed through the patients' narrative, which doctors all too often see as a distraction from, ‘getting to the bottom of things’
patients and doctors see the world in differing ways
People frequently resist information that contradicts their views, such as corrective information— for example, by bringing to mind reasons to maintain their belief — and in some cases actually end up believing it more strongly as a result.
Al Lewis has started a blog called They Said What?, on which he posts the assertions made by companies and asks questions that probe the accuracy.
TheySaidWhat? asks somewhat rhetorical (ok, almost entirely rhetorical) questions that identify possible mistakes in high-visibility contexts and offers those who committed the mistakes the opportunity to correct, apologize for or retract their mistakes…or explain how their positions are correct and we have made a mistake by questioning them.
Her family did not call us. They did not call her primary doc or endocrinologist. They did not go to an urgent care center. They went on the Internet.
Patients should use the Internet as an educational and supportive tool and use their doctor to actually give medical care. You should not have to do a “search” when your need for help is right now.
Are you an internet-friendly or an internet-hostile doctor? Does it make you uncomfortable that patients will seek a “second opinion” online? Do you feel offended by the patients’ attempts to learn more online? I hope not.
some of the best health-related websites have been made by patients! These websites often offer helpful information that physicians may think less important to discuss i.e. tips for coping and living with the disease.
I think the issue is that instead of focusing on what it truly means to have a good patient experience, we’ve allowed ourselves to be swayed by people who equate patient satisfaction with patient dictatorship.
Herein lies the inherent problem that accompanies “working with” Big Food; most health advocates’ suggested changes and policies pose a threat to its profits.
Food Allergy Support. Join the discussion about what it is really like to live with food allergies.
I haven’t yet mentioned the fact that the study was funded in part by the Corn Refiners Association, the trade group representing manufacturers of the very “food fear” examined, i.e., concerns about high fructose corn syrup (HFCS).
Wansink also contrasts what he sees as the largely biased Internet with more trustworthy “mainstream media,”
The food industry would no doubt prefer a return to the days when it alone controlled the narrative about food ingredients and food processing.
Over the July 4th weekend, a reader sent a link to a paper about to be published in the American Journal of Clinical Nutrition
Note the presence of companies making processed foods whose sales would decline if people ate more F&V.
Some doctors studied reported, in fact, that they secretly hope that their challenging patients will not return
Patients like me also walk a razor-sharp tightrope. We risk being labelled as “difficult” if we persist, yet we risk being dead if we don’t.
Worse, doctors may even slap the term “anxious female” on the patient’s chart, virtually guaranteeing subsequent misdiagnoses and dismissals during future visits.
Researchers also found that the presence of stress shifted the interpretation of women’s chest pain, shortness of breath and irregular heart rate so that these were thought to have a psychological origin.
By contrast, men’s identical symptoms were perceived as cardiac whether or not emotional stressors were present.
I chose my gastroenterologist based on his credentials and the quality of training and experience listed on Healthgrades.com
I brushed my instincts aside, presuming he was just having a “bad day”
I persist in my attempts to understand the details to which he shouts “Shut up and listen” with increasing decibels.
“People initially join up because they want support and information. Those who stay want to share information and provide support, to give back,”
“We are moving from the era of traditional media, where people are receiving information, to one in which they are contributing to the knowledge source.”
I tried to resist, really I did. I brought no printouts to the pulmonary appointment, I was going to be the good mom and just talk about dd.
carefully watching my approach so as not to offend or look like google-mom
Dd has been having a bit of an asthma flare this week. Ped office suggested coming in for a quick check and things looked good. This was the first time I met this doc. I just answered his basic ?s.
He told me I was one of the best educated asthma moms he's met :) .
In the back of my mind I was congratulating myself for not sharing any of my unorthodox asthma ideas & staying strictly on-topic. :hiding:
I need to have a small procedure done. The woman asks me if I'm allergic to contrast dye ... I tell her not that I know of, but I don't remember if I've ever had it ...
and this is when I think you fine folks ...
She tells me not to worry because they have the Benadryl ready. I couldn't resist ... I mentioned my understanding that Benadryl doesn't stop ana, epi recommended. She said they used to give epi in those cases, but stopped due to worries of heart issues. Then she reassured me that they do have a crash cart, but they don't like to talk about that ... Lol, is it wrong that I find this funny in a warped way.
Hmmm ... warm, fuzzy feelings indeed ...
Is it wrong that I think I'll take my chances rather than risk annoying a doc with a printout of the NIH recommendations? :misspeak:
getting information from other patients online is dangerous because "you don't know who these people are."
Share Internet information with your doctor wisely. Don't walk in with a stack of printouts that your doctor won't have time to read during the appointment.
Ask too many questions.
If you have three pages full of questions, show them to the nurse. Say ‘How many of these should I wait to ask the doctor about? How many can you help me with?’”
“[When I would share] what I’d learned from a credible resource such as Mayo Clinic, she was open to listening carefully. Had I simply said that I’d Googled something or discovered health advice from a source she deemed to be untrustworthy–Hello, Dr. Oz!– then there’s no way she would have been as open to hearing information that I was sharing with her.”~Carolyn
Two of my favorite health care thinkers appeared – together – in recent BBC magazine and radio interviews: Gerd Gigerenzer and Glyn Elwyn.
The BBC magazine story, “Do doctors understand test results?” is worth a look. The two also appeared on the BBC radio Health Check program.
"The dentist wanted to X-ray her," Gigerenzer recalls. "I told first the nurse, and then him, that she had no pains and I wanted him to do a clinical examination, not an X-ray."
These words went down as well as a gulp of dental mouthwash.
But it's not just that doctors and dentists can't reel off the relevant stats for every treatment option. Even when the information is placed in front of them, Gigerenzer says, they often can't make sense of it.
a distraught Chapman said she wanted to terminate the pregnancy immediately
What she — and the doctor — did not understand, Chapman’s medical records indicate, was that there was a good chance her screening result was wrong. There is, it turns out, a huge and crucial difference between a test that can detect a potential problem and one reliable enough to diagnose a life-threatening condition for certain.
Meantime, the assault on journalistic credibility…and the unwarranted assault on science by journalists who miscommunicate findings and then ridicule what they miscommunicate…continues.
"As doctors we tend to often use words like, 'very small risk,' 'very unlikely,' 'very rare,' 'very likely,' 'high risk,' " she says.
But those words can be unclear to a patient.
working on ways to involve their patients in shared decision-making
future business decisions are based on what the sponsor expects or dictates, and not always what is better for customers, clients or (as is the case of the Alliance) members
You have to wonder how many side effects of approved devices go unchecked, because of the limits of FDA’s handling capabilities, conflicts of interest, and doctors’ understandable fear of law suits.
Informed consent, however signed on paper, is meaningless if doctors misrepresent risks, or if patients don’t understand those but sign as a matter or trust, or under duress.
The solution involves greater transparency and reducing conflicts of interest at the FDA, and among doctors who perform and prescribe treatments anywhere.
Yale's @hmkyale calls informed consent "a sham" - not an honest discussion of risks/benefits ow.ly/Kg3O8 #Lown2015 MT @Farzad_MD
With no requirement that hospitals and clinicians be candid with patients about risks and costs, informed consent is "a complete sham," says Harlan Krumholz, MD, speaking at the Lown Institute conference this week.
A provider has great power when he or she makes recommendations because the patient is not knowledgeable, and in that power there is potential for abuse. The cure is to make the patient knowledgeable. A second opinion can do that, but to be properly impartial, that consulting doctor or dentist should not make money by selling the treatment that he or she diagnoses.
Medicine, in case anyone still has illusions about it, is apparently a business like any other.
The Internet is a font of credible health information – if you know which sites pass the test, Francescutti said. Reputable sources include the Mayo Clinic, Johns Hopkins University and the U.S. Centers for Disease Control and Prevention. For searches beyond these well-known sites, Francescutti recommends checking out the U.S. National Library of Medicine’s online tutorial on how to evaluate which Internet sources can be trusted. “You have to be careful of snake-oil salespeople,” he said.
Are online patient communities any better at producing accessible and reliable information, which patients find useful?
At a recent London meeting, convened by the charity Healthtalkonline, patients and carers spoke passionately about the value they derived from the information, support, and reassurance of online patient communities.
“Whatever you do,” said the doctor, “please don’t google this.” Her tone was almost pleading.
We googled like crazy. We googled the diagnosis, we googled the medication, we googled alternative therapies and then, for good measure, we googled the doctor. We even considered retaliatory googling
But like other ostensibly negative analyses of breast cancer screening, it’s gaining traction on social media.
A take-away message may lead plenty of women, doctors and journalist to think that digital mammograms are expensive and not worth it. But the study @JNCI_Now says nothing of the sort.
Recent research suggests patients want to share what they learn online but often get a negative reaction from doctors.
Starting as collaborators could make a big difference in how medical care is delivered as well as received.
if you ever want to end a party early, start talking about patient satisfaction.
As physicians, we all want to improve the care we provide our patients. This is what we do every day, so we don’t need a survey to make us do the right thing.
Lisa: What are the primary difficulties or frustrations you experience related to your activism?
Jessie: Knowing that it doesn’t matter whether I’m right or not to the people who are shaping health care today. Patient concerns are — rhetoric to the contrary — simply a low priority for the delivery of health care except for those deluded souls who believe that health care will be cheaper if we patients are more engaged, i.e., the more risk that can be shifted to us, the more likely we are to refuse expensive care.
I can’t get away with labeling a patient in my chart as a symptom magnifier or minimizer, having poor insight into their contribution to the problem, describing pain that does not fit with the setting or findings, making poor choices, non-compliant.
The point is, the collected information, assessment and plan that the patient and clinician are basing diagnosis and treatment on should be used as a collaborative tool, not as the clinician’s private record of why they did what they did (to the patient).
I sat down next to her and showed her what I was typing. She began pointing out changes.
As we talked, her diagnosis — inflammation of the pancreas from alcohol use — became clear, and I wondered why I'd never shown patients their records before.
Defenders repeatedly invoke “transparency,”
Some of the rhetoric has a defiant, even self-righteous tone
And there’s no clear endpoint: about 60% of the patients surveyed in the OpenNotes study believed they should be able to add comments to a doctor’s note
Ms. Thomas, a heart attack survivor and author of two blogs, Heart Sisters and The Ethical Nag, wondered why patients would sign up in droves to listen to her talk about heart health—but often fail to hear their doctor’s advice. In her post, Why You’ll Listen to Me – but Not to Your Doctor, Ms. Thomas explores the reasons why doctors’ messages are not resonating with patients?
Dr. Evans tells his Belgian audience a moving story of patients telling other patients how to tell your kids you have cancer. He further warns the doctors:
“Patients are much smarter than you or I are about this subject, even it that’s our field, and what they come up with is more useful and more real.”
many patients are embarrassed to ask the doctor to repeat something they didn’t understand so they walk away confused. This has been a boon to health information sites such as WebMD — patients fill gaps of information by going to “Dr. Google“. Most clinicians realize that communications is the most important “medical instrument” yet time pressures don’t allow them to spend a great deal of time with patients.
“Are you frickety-frackin’ kidding me?”
My favourite readability scale used in the New Jersey study, by the way, has been in use since 1969 and is called “SMOG grading” – which stands for “Simple Measure Of Gobbledygook”.
“You have to think about reaching people where they are.”
American Hospital Association (AHA)
what AHA and its allies have been pressing on CMS is the elimination of public reporting, not its improvement
Hospitals might be forced to respond to this patient misuse of data by improving efforts to decrease the incidence of never events.
I’m also certain that I didn’t answer every single question from every single parent. I would suggest it’s impossible to do so when you see over 20 patients in a day, all the while answering phone calls, speaking and coordinating care for patients not in the office with outside specialists, filling out school forms for taking Benadryl or playing sports, and assisting the medical team to triage and communicate with families.
I have an up-to-date online repository of health information for families to browse and review pediatric health information when necessary.
Patient engagement and satisfaction have become trendy concepts and we must be aware which “patient” voice is being used. Industry likes to use front groups, and present its positions through “patients.”
We need to make sure the patient safety voice is not only represented, but can be heard over the noise of money, politics, and power.
The relationship with a doctor is a very personal one, built on communication and trust. In choosing a doctor, the "chemistry" between the two of you must work.
Balance assertiveness with respect and understanding.
Despite the growing acknowledgement of the value of engaging patients in their health care, the term “patient engagement” is at risk of becoming nothing more than a “hot buzz phrase,”
Methods: Five electronic databases were searched from 2002 to 2013 with no language restrictions (included MEDLINE; PsychINFO; CINAHL;Web of Science; and SCOPUS). A qualitative software-based thematic analysis was performed on papers dealing with the concept of patient engagement retrieved by a systematic review of the literature.
Our results suggest that we view patient engagement as an evolving concept that reflects the historical and disciplinary context of the patient’s care experience.
I've got a confession to make ... I'm one of those things calked a Medical Googler
Ashya King’s father scoured the internet and challenged the Southampton doctors’ decisions. It’s a scenario that health professionals have got to get used to. Information is being democratised, and suggesting patients should not access it on the grounds that it may mislead them is absurd. The new reality for doctors, as the jargon puts it, is to “act as guide, not God,” and to avoid branding patients who do their own research as difficult.
Rekdal has studied how people in academic circles use and misuse information sources in their publications. He has found a number of unnerving examples in which scientific journals have become places where myths and urban legends can take root.
I have found myself rendering treatment recommendations only after I’ve sat with a newly diagnosed patient for some time discussing (and yes, even debating) the data. I have also come to appreciate that an evidence-based approach to many cancers must take into account the individual and that her preferences and goals are as important as the results from the randomized clinical trials we hold as the gold standards. Not only do I appreciate these conversations, I have come to anticipate them.
Federal regulators are reversing course and will resume publicly releasing data on hospital mistakes, including when foreign objects are left in patients' bodies or people get the wrong blood type.
Conflicts of interest are real, and they are still influencing decisions from the level of the patient all the way up to national health policy. We will never be able to eliminate them all. But acknowledging them and talking about them openly is an important first step toward minimizing their impact.
Tackling the uncomfortable subjects—such as total transparency with patients regarding payment or medical errors—is a large part of TEDMED 2014
It’s not just patients that are scared. Doctors are scared, too
People sometimes wonder when they may question a doctor’s diagnosis or advice. I say always.
However — and it is a big however — this is not the same as physicians rubber-stamping everything patients believe or want.
There’s only so much providers can do: They are dealing with patient overload and are short on time. Can physicians shoulder the responsibility of giving patients and their families/caregivers the equivalent of a college course on how to become active participants in care and navigating our health care system?
I would want a warning saying, "Check this box and FYI: people discover their parents aren't their parents, they have siblings they didn't know about. If you check this box, these are the things you'll find."
One of my favorite phrases is sunlight is the best disinfectant. I still think that's true. But this has challenged that worldview.
At one point they even told her she was delusional, despite her diffuse ulcerating lesions.
It’s a well-known fact that many patients don’t fit our heuristics. Instead, they have weird, unrecognizable constellations of symptoms—and most doctors don’t have the time to deal with it.
There are too many patients like Jack and Victoria scrounging around for years until they find a doctor who will listen.
“I order a drug and the patient calls me up and says the insurance company won’t approve it, and somehow it is my responsibility to fight the company for them.
“To bill for lung spirometry, he would have the patient quickly blow into a tube. He didn’t even look at the results.
Unless our medical system recognizes the true value of good communication between doctors and patients, and genuinely prioritizes this by providing the conditions necessary for it to thrive, the quality of our care will suffer even as its costs continue to rise.
Another part of the answer will come from increasingly savvy, empowered, and data-laden patients who will value not only a reassuring laying on of the hands, but also the knowledge that the physician has demonstrated expertise treating patients like her.
Educated consumers more likely 2 use potentially unreliable online healthcare info sciencedaily.com/releases/2014/… >@ScienceDaily #medsm #meded #s4pm
Consumers are increasingly turning to forums, video-sharing sites, and peer support groups to gather anecdotal information and advice, which may distract them from more reliable and trustworthy sources.
federal incentives and tying reimbursements to patient satisfaction scores
Doctors must never be afraid to stand by their principles and clinical judgment. Patients are ultimately the ones who will lose out if that happens.
“When my mother had breast cancer, we looked up her oncologist and found that he was a spokesperson for the pharmaceutical company that made the chemotherapy regimen that he had prescribed for her,” she said. “Such a conflict meant we had no way of knowing whether this was actually the right regimen for her.”
my bilateral mastectomy
A person with lived experience on the team designing this safety protocol would have identified the effect the repeated questions would have on the patient. A person drawing on their experience as a patient would have realized that with each repeated inquiry, the patient and family member could experience increasing fear, doubt, and panic.
“She’s a hell of a tantrum-thrower,” said Dr. Wiscott, another general surgeon and close friend of Dr. Ivanovich. “She’s somehow managed to fuse the frustration of a two-year old not getting their way with the anger of a raging teenager. It’s really fantastic. That’s pure natural talent right there. “
A surgeon shows his #vulnerability w patients--he can't type. I love this article #transparency @nytimeshealth well.blogs.nytimes.com/2014/09/18/you…
I’ve chosen to meet the awkwardness head-on. I turn towards the patient and say: “Forgive my hunting and pecking, I never learned how to type. Don’t worry, I can operate just fine.”
By admitting a little bit of vulnerability, I also show the patient that I’m human. Surgeons have traditionally been perceived as heroic, mythical figures who do great work in the O.R. but may not possess the best people skills. Typical surgeon communication of the past was gruff, paternalistic and authoritarian: my way or the highway.
The Institute of Medicine of the National Academies has released their long anticipated 500-page report, titled Dying in America – Improving Quality and Honoring Individual Preferences near the End of Life. This is a critical addition to the ongoing conversation about health care in the United States and makes observations and conclusions, which we need to consider and understand.
•Inadequate shared decision-making may introduce confusion in encounters.
•Physicians sensed inadequacy, but were not able to change communication strategy.
SDM may be discredited because the medical community has not acquired the necessary skills to perform it, even if it is ethically and legally mandated.
Beginning with the Institute of Medicine's (IOM) landmark Quality Chasm report in the late 1990s, the health policy establishment, the medical profession and the American public began to hear a new and disconcerting message: American health care was not patient-centered.
some doctors have resorted to just giving in to patients' demands even if their clinical judgment tells them otherwise. That's hardly good medical practice
But the research also found that patients in this empowered group are the most demanding but also the most rewarding. Although they may be more willing to change doctors, once they’ve found a person they can work with, they are more likely to stick with that health care provider.
You don’t have to delve too far along into the other interviews here before bumping into big fat differences in how patients and non-patients answer identical interview questions about patient engagement.
He should have entered the room with a bright smile and said something like: ":Congratulations. Great news: it's not your cancer causing these new problems. There are four different possible explanations.
MT @DrRichardBesser @ThisWeekABC: Does your family know your on end-of-life wishes? Start a conversation theconversationproject.org
“Students, you should never tell a patient of the diagnosis of cancer,” pontificated our chief of surgery. “You should protect them and not give them a fatal diagnosis.
The use of coordinated care with hospice and home health care is now allowing most patients to die where they wish — in their home or at least in a home-like environment.
the goal of drug companies is not to educate, but to sell products
More than 80 percent of physicians surveyed say they have reached their limit on how many patients they can see in a day and many plan to cut back on their services within the next three years by turning patients away or reducing their office hours.
Standing up to a V.I.P. patient can be difficult. Dr. Klitzman remembered once taking care of the daughter of a “household name” writer. “The household name was a very powerful presence and wanted things their way,” he said. “It took more gumption than I usually had to stand up and say what was best for the patient.”
Judging from the way the questions are framed, I think the message will be clear.
High death rates galvanised quality improvement and innovative change in one of the Netherland’s largest hospitals, transforming it into a model for patient participation, reports Tessa Richards
Thus physicians become the steward of the population, allocating these resources as they see fit to benefit the community.
This version of healthcare is the complete antithesis of the ePatient movement. Medical decisions are not inclusive, not patient centric, and not up for debate.
What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
We must be very cautious about putting something on the “do not” list. I think the campaign has been a little hasty in some of its recommendations.
what if you could not just see your doctor’s medical notes but actually comment on them and contribute to them?
That’s the next step, says Jan Walker, co-director of the “OpenNotes” project and a researcher at Beth Israel Deaconess and Harvard Medical School. With a new $450,000 grant from The Commonwealth Fund, researchers plan to develop and test “OurNotes,” an interface that will invite patients to contribute to their own medical notes.
"Physicians tended to overestimate the minimum evidence of efficacy required of new drugs," write Aaron S. Kesselheim, MD, JD, MPH, from Brigham and Women's Hospital in Boston, Massachusetts, and his colleagues. "Similarly, many misinterpreted the term breakthrough—believing these drugs were supported by stronger evidence than required by the statute."
In our commentary, we discuss a variety of challenges, including safety issues, legal liability issues, regulatory issues, and possible disparities in healthcare access to CGM and mobile technology, but perhaps one of the biggest challenges lies at the intersection of technology and culture.
Healthcare stakeholders, it is time to embrace not only new technologies (mobile technology and social media) but a new participatory culture, which welcomes patients as partners for achieving innovation and transformation inside the healthcare ecosystem.
The site sent Botto Bistro a threatening little letter, but Cerretini refuses to back down, claiming he's attracting higher-paying customers who are quite loyal. Not to mention, damn funny.
In a survey by Emergency Physicians Monthly, 59% of emergency physicians said patient satisfaction surveys increased the amount of tests they ordered.
Part of the new model Huisman will test—good anecdotal evidence that it’s working already exists—turns on pediatric radiologists. He sees them as gatekeepers, questioning the need for every CT scan ordered and offering advice on radiation-free alternatives. “A two-minute conversation in the hallway can mean the difference between an ultrasound and a CT,” he says.
A preposterous decision! #ESMO2014 Cancer Congress bans media, nurses, pt advocates from Exhibits/Symposia biotechstrategyblog.com/2014/08/esmo-2… via @JBBC
If physicians opened themselves up emotionally to every patient they would simply not be able to cope. Although the thought might be nice, the idea that physicians are superhuman is incorrect. Doctors make mistakes, experience heartache, and need outlets to express themselves.
This authenticity is what is most important in the physician-patient relationship.
covering all aspects of your patient’s health, following up on every test result, battling with documentation, navigating insurance company hurdles and administrative mandates. You are exhorted to be cost-effective, time-efficient, patient-centered, and culturally competent. You must be conscious of patient satisfaction and quality indicators. You must avoid liability but not over-order tests. You must document extensively but not keep patients waiting. You must comply with every new administrative regulation and keep up your board certifications. And you must of course achieve those all-important “productivity measures.”
When the host interrupted and asked him to explain the work more clearly, he seemed genuinely surprised and not a little annoyed. This is the kind of stupidity I am talking about.
Call it the Curse of Knowledge: a difficulty in imagining what it is like for someone else not to know something that you know.
Unlike their motto “We speak for the dead to protect the living”, Arnold found that they weren’t saying very much at all.
The lack of transparency and accountability spurred Arnold to submit an appeal to the Health Professions Appeal and Review Board (HPARB), a government administrative tribunal that reviews CPSO decisions for “adequacy and reasonableness”.
“The government knows you’re up against a brick wall,” Arnold says, “financially you can’t compete.”
10 commandments of evidence-based blogging (and other forms of research writing too!) @FoodAllergy #fablogcon pic.twitter.com/KZRTUDdrE3
Background: Delayed and missed diagnoses lead to significant patient harm. Because physician actions are fundamental to the outpatient diagnostic process, a study was conducted to explore physician perspectives on diagnosis.
Concerns about health system structure and providers' interactions with one another and with patients far exceeded discussion of the cognitive factors that might affect the diagnostic process. The results suggest that, at least in physicians' views, improving the diagnostic process requires attention to the organization of the health system in addition to the cognitive aspects of diagnosis.
Humour helps health professionals to cope. But is more needed? And if so, what?
Dr. Elliott had seemed so nice and sympathetic to the family… was that all pretend? A fake show of sympathy?! Now Trevor was angry.
Black humour has been used as a coping strategy for stressful or traumatic events. Is this appropriate in a patient-centered care world?
Although argot may be useful to reduce physician and trainee anxiety, there is no question that slang or argot is often unprofessional[6]. The real issue is what to do when one hears it.
expectations are unfair and unrealistic. Each one of these traits is a skill that needs to be developed, nurtured and mentored over time.
And it raises the question: What does this do to the professional - does the doctor become a coach, a servant or an adviser - what will the new role be?"
"The role of the doctor, ironically, must be to go back to the bedside," he says. "To be an interpreter of symptoms - so we can learn every possible aspect of what the patient is feeling and experiencing - then input the information into an iPad and come out with a list of all potential diagnoses."
Developed by health literacy experts, the Ask Me 3 program encourages patients and families to ask the following key questions of their providers to better understand their health conditions and what they need to do to stay healthy:
What is my main problem?
What do I need to do?
Why is it important for me to do this
This study suggest that the described inhibitors of empathy may originate in the hidden curriculum and reinforce each other, creating a greater distance between the physician and the patient, and possibly resulting in decreased empathy.
Empathy draws me closer to patients. However, I am afraid of the disappointment when bad news arises.
Should I be more distant as a defence to keep me sane?
Patients often held different views from those traditionally held by physicians of what constitutes health and good outcomes.
One of the original physician bloggers, Mike started blogging in 2005 under the nom de plume of “Dr. Anonymous.” As Mike recounts, pre-HIPAA physician blogging was generally under the radar using pseudonyms to allow physicians the ability to speak their minds and “rant” against the system.
HOW TO obtain proper end-of-life care and die with dignity is a conversation topic that most patients and their doctors would prefer to postpone as long as possible. It is also a politically fraught issue
Patient groups often shout loudly for access to drugs but are quieter about their links to industry. Sophie Arie and Chris Mahony ask whether this is acceptable given increasing demands for transparency elsewhere in medicine
The question “Can I trust you?” is always on our minds whenever we interact with other people (particularly when we meet them for the first time) though we usually aren’t consciously aware of asking it.
This study investigates how differences in the use of online health information and social media affect the use of online health services.
In Anne Ellis’ (Allergy & Immunology, Department of Medicine) Medical Grand Rounds talk1, she zeroed in on this topic. Anne points out that the use of social media in health care has changed the face of research and the way that clinicians interact with patients.
“If readers begin to suspect that your content is heavy on product placement, if they see excessive amounts of sponsored posts, you risk losing what’s most important, which is trust and authenticity,” said Ms. Kueber, who still relies largely on banner ads and has so far done only two sponsored posts.
This is the gap between incidents that require disclosure and incidents that are disclosed. They conclude that consensus is forming that only around a third of incidents are disclosed.
The lesson for all humans is to be better at math when making decisions.
the spread of rumors, misinformation and unverified claims can overwhelm any effort to set the record straight
The challenge for fact-checkers, it seems, is to make the facts as fun to share as the myths they seek to replace.
The AMA says it favors the phased-in approach that limits the quality data available but says the CMS shouldn't add data until it fixes errors in the system.
Some consumer advocates suspect that undue influence by the powerful doctors' lobby has slowed the process.
But, as I leave, I can’t quite shake off the impression of being processed by an overloaded, technologically driven system in which patients are more pawns in the game than partners in care.
@ePatientDave this is another of the 'just google it' stories..from @speccymcspec who spoke at #qubept twitter.com/speccymcspec/s…
“Ah,” said the GP, “I don’t know anything about it. You may just google it.”
But it didn’t feel like he was giving us the power. It felt like he was washing his hands of us.
You began by kneeling on the ground so you could be level with Mr. K.
You took your time with the discussion. You did not appear rushed, distracted or uncomfortable. I think Mr. K recognized that his physician cared and had his best interest in mind.
While some of us may embrace our physical pain during a workout or marathon–most of us try to escape psychological/emotional pain.
Do members of our team courageously allow themselves to experience feelings of failure without blaming others, or rationalizing? Can our team handle the pain of failure and learn from it?
This was a case of a doctor exploiting patients, using them as commodities in order to make money.
Evidence-based medicine (EBM) and shared decision making (SDM) are both essential to quality health care, yet the interdependence between these 2 approaches is not generally appreciated. Evidence-based medicine should begin and end with the patient: after finding and appraising the evidence and integrating its inferences with their expertise, clinicians attempt a decision that reflects their patient’s values and circumstances. Incorporating patient values, preferences, and circumstances is probably the most difficult and poorly mapped step—yet it receives the least attention.
“On several websites, [her physician] was listed as a highly paid speaker to a drug company, and in fact, often spoke on behalf of the same chemo regimen that he had prescribed her,” Dr. Wen said. “She called me in a panic, and I didn’t know what to believe. Maybe this was the right chemo regimen for her, but maybe it wasn’t.”
But a hurried, task-oriented approach doesn’t accommodate the meandering, overlapping, widening issues of patients. It undermines kindness.
This blog is my way of trying to make a difference. To fill that yawning gap before you get a diagnosis and afterwards. If I can help just a few people not to feel so alone by writing all these blogs then I have achieved something that wasn’t there when I needed help.
Participatory Design and the Making of Health: My TEDx Detroit Talk by @joyclee #allergy #design slideshare.net/joyclee/partic… via @SlideShare
In Shared Decision-Making Strategies for Best Care: Patient Decision Aids, the authors suggest concrete steps to fully integrate the ideals and practices of shared decision making (SDM) into routine clinical practice. The discussion paper, published by the Institute of Medicine (IOM), is a product of participants in the IOM’s Evidence Communication Innovation Collaborative.
The study offers a compelling case for price transparency combined with medical consumerism as one strategy that could help reel in the nation’s $2.8 trillion health care bill.
Simplistic notions, such as doing more is better or doing less is better, have no role, either clinically or in the policy world. Figuring out who is likely to benefit from intensive therapy and who will do fine without is critically important—and not just for the bottom line. Indeed, patients’ lives depend on it.
If your business is defamed online, how can you file suit against someone you only know as “MyLittleBrony524?”
Patient decision aids can take many forms – audio, visual, written, etc. – and are used to help inform patients about their medical options so that they can make educated choices about treatment. Although universal standards don’t yet exist, several sources suggest that good decision aids convey information about all of the options available, explain the consequences of each choice and offer previous patients’ experiences.
“@KathEvans2: Transparency in sharing #ptfeedback shifts the culture and encourages staff to challenge themselves and each other #kindamagic
One of the tools from #kindamagic today, I think a question we should ask every day #patientexperience pic.twitter.com/zdxCFGx2hn
As for patients, when they’re diagnosed with a critical or chronic illness, they don’t get any time to practice. They get thrown into the game right away.
Patients' search for online diagnoses not useful - Fewer than 5% of doctors felt it was helpful buff.ly/ZxV3mw
More patients are going to their GP and telling them what treatment they need based on information from apps and the internet, a survey has suggested.
A third of the UK physicians surveyed said patients would come with suggestions for what prescription they should receive.
The myth of the demanding patient is more about our own responses and how lackluster communication skills can contribute to difficult situations that stick in our throats and our memories.
Take the abuse of dating websites. “People go on dating sites in the hope of fulfilment, and they sometimes get scammed,” says Modic, who researches the psychology of internet fraud at the University of Cambridge. “And that makes me angry.”
The doctors were good at spotting obvious tumors, because the software picked them right up. But they were lousy at spotting subtler cases, apparently because they’d come to rely too much on the computer, and not enough on their own eyes and brains.
Apparently, this video entitled "The Patient Who Knows Too Much", which is part of a training program aimed at doctors to help them deal with "difficult patients," has caused quite a stir.
"Patients who present their expertise as telling you how to practice medicine are implicitly discounting your expertise," adds Leonard Haas, a psychologist at University of Utah School of Medicine.
Being An Informed Patient Is Not A Substitute For Trusting Your Doctor.
Is it possible that a patient can believe they are more knowledgeable than they actually are?
Patients may be prone to create and present theories to their doctor, rather than merely presenting detailed symptoms.
And just like every other campaign that either straight lied or fell apart and never shipped, Sethi utters that magic crowdfunding message : Pavlok is all ready to go into production, it just needs a little cash to get there.
The troubling reality is, journalists have deadlines and there are too many publicity hungry crowdfunders out their willing to help them out by badly overstating their hands.
the majority of “healthcare information” on the internet is actually MIS-information. It’s designed to drive traffic to sell products; it’s designed to drive traffic to pay-per-clicks revenue. It’s NOT designed to provide accurate, useful healthcare information.
The fact is, when people have symptoms, or are given a new diagnosis that they don’t understand, they do what ALL of us do when we have questions: they go online.
A lot of this thread is just lighthearted fun & ...
maybe a lurking allergist or 2 might find something that inspires :) .....
but it does have a serious side ... What is our "place" as patients/caregivers? Is there really a commitment to patient engagement in health care? If a patient sees a potential solution to a general problem, if we have an idea, if we have a legitimate criticism or concern about an expert study or expert advice .... what is the best way to handle that?
If in a support group, we start seeing what appears to be potential patterns in the anecdotes, should we not think about this because we are not an expert?
If we see official positions from FA experts that go against our experience ... is there a way to let them know that we may be an outlier ... maybe their theory needs adjusting ... hey, study me!?!?
If somebody like CM or TT's husband has expert knowledge in another field that would change the way allergists look at things, is there a way to form collaborations?
Credentials are hugely important ... they matter greatly ... but are they the only way to get a seat at the table of discussion?
All stuff that I think about regularly, too. :yes:
Multiple perspectives are generally a good thing-- as long as they don't compromise care/management in a timely fashion, YK?
I often consider this question, too-- as parents and patients with a life-altering, life-threatening diagnosis that requires ongoing daily management-- which, by and large, is a matter of a continuous string of judgment calls one after another-- eventually, that often gives us insights that even our allergists (no matter how expert) can't touch in THAT particular domain.
I'm not sure what to call such expertise, though, or how to measure it or credential such things. Clearly they matter-- as any allergist or parent knows. We do get better at living with LTFA with time, and it has a lot to do with experience.
If only there were a way to include that very legitimate seat at the table. :yes: All too often schools assume that we are not experts, when the reality is that a parent usually IS the "expert" on keeping his/her child away from the emergency room by the time a school has cause to interact with us. Basically, it boggles my mind that any classroom teacher would not listen and heed a parent that looks at a series of events or planned events and says "Man, I sure wouldn't do that-- WAY out of my comfort zone." There is frequently a good reason for that comfort zone. At the very least, shouldn't the question be; "Why do you say that?"
This is why lay review is often so frustrating. Picking up the vocabulary isn't always enough to provide a true framework of understanding (assuming that a consensus exists). There's no basis for evaluating the basic experimental design to tease apart those research articles which are bad/flawed, versus those that are good or well-considered and thorough. That's critical, because the validity of the conclusions rests upon that distinction-- it's not how WIDELY READ a paper is, nor how popular with the press.
What I find frustrating as a lay person is that if I base what I say to a doc or an allergy org on sound info, good sources ... they often still can't "hear" what is being said, they won't really look at the info. ... Like when I tried to convince a doc that hummus had enough sesame protein to cause a reaction ... I knew that I was right on this issue ... I had the info to prove it ... I couldn't convince her ... and she was a nice doc, we got along fine. Sometimes I think the health community is more comfortable with patients/caregivers who don't have a good health care literacy. When we start to know what we are talking about, it kinda freaks some of them out imo.
My idea of a great research setup would in no way be based on popularity. It would be all about quality & potential & evidence. I do believe in a Ratatouille type wisdom that a great idea can come from anywhere, including from a patient/caregiver. How to best capture and develop those valuable patient ideas in the sea of patient pseudoscience is a really interesting question to me. Even expert great ideas could sometimes use a bit of patient perspectivetweetingtweaking imo.
Sometimes I wonder if the professional health community thinks that if they ignore the tough questions from FASer forum types, then we will fade away .... I think the opposite is probably true ... if they want to quiet forum users down, they should consider truly engaging, trying to address honestly and transparently our questions and concerns. If more patient needs were met, I think more online activity might turn to more "acceptable" activities like sharing recipes and giving each other virtual hugs.
ETA - meant to say tweaking, not tweeting ... that's funny ...
When we start to know what we are talking about, it kinda freaks some of them out imo.
YES!!!
:yes:
And I think that everyone deserves a clinician who is comfortable as a partner, rather than as a godlike, patronizing Figure of Absolute Authority. Not all clinicians are-- and far too few clinicians have the time and inclination to really keep fully up to date on current practice parameters even within their own narrow specialties, nevermind some of the more esoteric or unusual (rare) things that we may present to them.
This places patients in an impossible position, actually. Do we:
a) keep ourselves informed to the best of our ability? this means keeping up with AAAAI meeting abstracts, patient-care guidelines as they are published, etc.
b) follow the (sometimes out of date) recommendations, well-meant, of our physicians without challenging their authority?
If you're an informed patient, eventually that conundrum is going to present itself. A good clinician is happy to keep learning-- and the really stellar ones are happy to learn even from patients! Heaven knows where they find time, truthfully, but they do keep current on research in the field because they love their work and the field. But a mediocre or just "competent" physician may not. That person may still be a pretty good doctor-- just not for the ends of the bell curve in the specialty.... which... they may not even recognize since they've not kept current.
I've seen that with allergists. Ours knows that DD isn't the run-of-the-mill patient. Not even in her cohort. A less stellar physician could, in contrast, assume that we aren't really living what we are, and that we are just "not compliant" or "over-reactive."
far too few clinicians have the time and inclination to really keep fully up to date on current practice parameters even within their own narrow specialties, nevermind some of the more esoteric or unusual (rare) things that we may present to them.
This places patients in an impossible position, actually. Do we:
a) keep ourselves informed to the best of our ability? this means keeping up with AAAAI meeting abstracts, patient-care guidelines as they are published, etc.
b) follow the (sometimes out of date) recommendations, well-meant, of our physicians without challenging their authority?
If you're an informed patient, eventually that conundrum is going to present itself.
Great points made in that whole post CM.
ok ... this is one of those slippery slopes so let me try to be very careful with how I word this.
Doctors are the experts ... if you have a medical problem, get yourself to a good physician ASAP ... if you still are having doubts or problems, get yourself to another physician for a second opinion. Do not try to just get your info from google or a support group.
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Do not do this! (@zdoggmd)
"I'm not big on thrombopoiesis"
https://m.youtube.com/watch?v=-rwcIRfHcAE&feature=youtu.be&a=
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ok, this is stuff that I usually only whisper to myself because I don't want to lead others astray.
My google skills and/or internet forum activity has allowed me to recognize questionable medical advice quite a few times with quite a few different doctors from multiple specialties. This type of thing is hardly ever acknowledged by those who are concerned about patients going on the internet.
It reminds me of "The Gambler" song ... sometimes you have to know how to play "the game", sometimes you have to know when to walk/run to another doc, at least concerning a specific issue.
What has allowed me to do this? I'm not really that smart ... I know that the docs know a lot more medical info than me ... but the thing is, I often have more invested in my family's health than a doc that I just met and who might seem distracted or rushed & I have time to do a specific search on a specific problem.
If you ask me to come up with solutions to the Israeli-Palestinian conflict or find a cure for cancer ... I do not have the ability. However, if I have a lump under my ear that's been there a while and my primary is telling me not to worry about it ... but I find info from good sources on the internet that are telling me that maybe I should be concerned .... then I would diplomatically tell the primary that I would feel more comfortable seeing an ENT ... which is what I did years ago.
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So, DO NOT diagnose yourself, but do educate yourself & get yourself to the appropriate medical doctor.
In all of the jillions of articles I have read and presentations I have attended on patient engagement, I do not believe I have ever heard the word “kindness” mentioned.
The patient left angry – the physician felt abused. Kindness in healthcare has to go two ways.
To my surprise, he took the number and called James to apologize. Stan then asked me to put together a seminar on disabilities for other trainees in our hospital. In the seminar’s first session, medical students and residents began by discussing how they had also witnessed inappropriate behavior toward people with disabilities but were too afraid to speak up.
Only after the Summersgills agonized over Kate’s future and spent almost $2,000 more on another test were they satisfied that Limone was wrong — their baby was fine. And when they learned that Limone had a financial relationship with the company that makes the test, called MaterniT21 PLUS, they wondered whether money had influenced the counselor’s advice.
Doctors generally know more about the value of a given medical treatment than patients, who have little ability to determine the quality of the advice they are getting. Doctors, therefore, are in a powerful position. We can recommend care of little or no value because it enhances our incomes, because it’s our habit, or because we genuinely but incorrectly believe in it, and patients will tend to follow our recommendations.
The forces that have led to a global epidemic of overtesting, overdiagnosis, and overtreatment are easy to grasp.
What I do vividly remember, however, is a small but profound act of kindness later that day when I was brought to my bed in the CCU (the cardiac intensive care unit).
We are never as kind as we want to be, but nothing outrages us more than people being unkind to us.
We’ve all been there – whether as a patient, a physician, a nurse, or an advocate – how do we make the right choice when faced with an important health care decision impacting ourselves or the person we are caring for?
“Good for patients, good for society, not good for docs? Doesn’t work,” he said.
He made a persuasive case for why “change” will only work when a new solution works for all three circles. You can watch his entire presentation below.
"The attractive force of the magnet pulled the wheelchair with such force that Laurie Reid was pulled into the device hitting it violently. After the violent impact of hining the MU machine, Ms. Reid was pinned by the wheelchair against the magnet causing her further and additional griivous injuries all over her body, including her face, head and skull, and with great physical pain and mental shock, anguish and suffering."
High tech and low touch leaves patients feeling frustrated and afraid.
I realize, from working in large world class healthcare systems as well as small rural hospitals that there are often gaps in innovation in the smaller systems but there are advantages in having a team of people managing your care who know who you are and what you are there for.
In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now.
You’d think doctors would be well equipped to navigate the shoals here, but at least two things get in the way.
Conflict can be awkward and uncomfortable. So many of us avoid it and cover up our frustration with a smile.
You create relationships that are neither authentic nor constructive.
But physicians have a responsibility to go beyond listing the best treatment choices, acknowledging their awareness of alternative medicine and then simply telling cancer patients, “We respect the wishes of competent adults, so it’s up to you to decide,” said bioethicist Dr. Arthur Caplan of the NYU Langone Medical Center.
“I think that’s wrong,” Caplan said. “I think we should not be as fearful in mainstream medicine of offering strong opinions about what’s the best course.
Should demonstrating empathy be an #AlwaysEvent? @pauljebb1 Here's how to m.youtube.com/watch?index=1&… HT @CarterBernie @6CsLive @Damian_Roland
“If they hadn’t have done that, I wouldn’t be angry.” (They genuinely believe this.)
Psychologists recommend you address the source of conflict in a non-confrontational way
People talk about empathy easily enough but it’s a different kettle of fish when you’ve got to practice it in real time.
Many of us in the patient safety world have heard the term “patient engagement,” but what does that term really mean?
The ethics of health organisations monitoring social media #justiceforlb #nhssm #hcsm …inkinginmedicaleducation.blogspot.com/2014/10/the-et…
Sara obtained this memo today through a Freedom of Information request. It details how Sara's blog had been monitored by the comms team from as soon as they were aware of it in March 2013 shortly after his admission to the unit. It specifically mentions this post in May 2013 just over half way through Connor's admission, where Sara described her distress at realising that Connor had a seizure but not being able to convince the staff that this was the case. Last week Sara was told by the Chairman of the Board that there had been no monitoring of her blog.
While I'll post the occasional complaint about a headache or flu on my Facebook feed, I am uncomfortable about entrusting Facebook (under any name) with deeper insight into any medical information beyond the odd ache or pain.
"You're weighing two very important interests: Is the government being [allowed] to do [a] proper investigation when it's called for?" Or are citizens' right to privacy being trampled, said Fenton. "It's not only physician rights. It's not only issues related to IT. It's patient rights. It's consumer rights. It's right to privacy. It's government intrusion."
Now, more than a decade after I first told Mr. Lazaroff's story, what strikes me most is not how bad his decision was but how much we all avoided talking honestly about the choice before him. We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease.
What patients think, or even know, what they’re entitled to know about their own medical record and what physicians and health systems think a patient should have access to continues to vex both sides of the equation, but the scale is tilting more toward a patient-focused mentality, even among regulators.
The nearly 40,000 American lives lost each year make suicide the nation's 10th-leading cause of death, and the second-leading killer for those ages 15-34.
And Dr. Stuart Foxman suggests offering this reassuring bit of truthfulness to patients:
“I don’t know – but I’ll do my best to find out for you.”
Ever wonder what your doctors and nurses talk about at the water cooler? Well, grab a paper cup and some Emetrol, because a new app is transporting medical chatter from hospital hallways to mobile devices.
The word “HIPAA” began echoing in my head.
Mental health patients are more likely to be misdiagnosed, less likely to be screened for cancer and diabetes, more likely to die and to die at a younger age because their problems are undetected or neglected.
conversations have to take place even if they are uncomfortable.
"I believe from honest talk comes good things," said Goldman.
There seems indeed to be little if any “confusion” among women that chest pain is their predominant heart attack symptom.
That’s why I despair when I hear of these potentially misleading pronouncements from experts, who are then widely quoted in the media.
All too often these days, I find myself fidgeting by the doorway to my exam room, trying to conclude an office visit with one of my patients. When I look at my career at midlife, I realize that in many ways I have become the kind of doctor I never thought I'd be: impatient, occasionally indifferent, at times dismissive or paternalistic.
When other medical staff couldn’t find a solution, Professor Heaton took charge. I wasn’t going to argue – I was just looking for anything. I owe him my life. He’s had to put in a huge amount of hard work to keep me alive. He is amazing – it’s as simple as that.
People may be denied credit, housing, employment or insurance, for example, if their medical data were readily accessible.
Thinking back as an inexperienced Emergency Department doctor and an exhausted GP, particularly before I had children of my own, I have no doubts that I left parents feeling bad about wasting my time.
Whether we are seeking medical help for ourselves or for our children, how doctors and nurses respond to our concerns can have a profound impact on our sense of being competent healthcare decision-makers.
Allow me to make a more modest proposal. Find three physicians and three nurses, professionally orthodox, yes I do mean old school, and liberally endowed in common sense, who are illiterate in modern managerial speak.
Be afraid. Very afraid. Not of Ebola, but of the fragility and costs of medicine
Have you ever met with blank stares when trying to explain a difficult concept?
Within the American Academy of Pediatrics there has been a rancorous debate about whether doctors should see un-immunized patients, and the academy’s position has leaned toward an inclusive approach. But, Dr. Horwitz said, “we were spending a lot of time talking to parents who weren’t immunizing and who were terribly ill informed.
Last year, the American College of Medical Genetics recommended that incidental findings of 56 genes representing several conditions must be disclosed to patients. The guideline sparked a firestorm in the genetics community about whether doctors should ignore a patient’s right to say no and why these genes should be the ones for mandatory disclosure.
St. Joseph's Hospital Health Center in Syracuse, N.Y., which took a big financial hit after suspending high-volume, "butt-slapping" orthopedic surgeon Michael Clarke, MD, has decided to restore Dr. Clarke's privileges.
This man had by then recounted the long story of his bad leg to three separate teams of doctors and nurses. I was the 14th interrogator by my count, and despite my standard opening gambit (“I know you’ve been over this before”) I was the one to flip his switch: The patient ordered me and my team out of his room and pulled the covers over his head.
We all know that the “operating system” and “user experience” of healthcare is complicated and problematic; yet we expect the user to adapt to our impossible to navigate systems and respond to our difficult to understand communication tools. If the user fails to master our obtuse system, we label them as having low “health literacy” (check out over 7000 articles published on the topic in Pubmed!).
a Google search for nearly any health issue results in a cascade of SEO-optimized link bait—symptom lists and forums presided over by the uninformed. Instead of internet medicine, we have cyber-chondria.
Candor and transparency from providers, rather than obstruction and defensive silence, is the only way the healthcare system will improve, says a report from the Lucian Leape Institute of the National Patient Safety Foundation.
And today, all too often, patients and families aren't told when an avoidable error caused them harm. Nor are they given support to deal with a tragic outcome. Or offered an apology. Or options for resolution. At least not in a timely way.
Improving transparency around medical error is a potential “magic bullet”
The report warned, however, there are many barriers to increased openness, such as fear of harm to reputation, livelihood or pride; and the desire of some players in the system to maintain the status quo and “resist the sharing of information.”
But deliberate withholding of information puts patients at risk and represents a “moral failure,” the report said.
So in those care planning meetings in the nursing home, if they ask nothing else, family members should ask “what drugs is mom on?” And that should be followed by “why is she on them?” and “are they helping?”
enticing customers to hand over their DNA sequences along with details of their lives in a questionnaire to build a giant database—one that academic researchers and biotech companies alike are, well, salivating over
One big question behind 23andMe’s business model has always been whether customers will be happy or upset when they find out that they realize they have paid to be used in for-profit research projects. “I’m sure some people will feel great, no problem, and some will feel cheated,” says Hank Greely, director of the Center for Law and the Biosciences at Stanford University. “
Here’s the paradox: For all that transparency does to drive out wasteful practices and promote collaboration and shared learning, too much of it can trigger distortions of fact and counterproductive inhibitions. Unrehearsed, experimental behaviors sometimes cease altogether. Wide-open workspaces and copious real-time data on how individuals spend their time can leave employees feeling exposed and vulnerable.
Must consider unintended consequences of data transparency. Hospitals transfer complex patients to improve stats. Bernard Lo. #hdpalooza15
The actual story was about how many more people are living with cancer than years ago, with record survival rates.
Keep in mind that medical judgments are not right or wrong. Physicians on the same case may have differing judgments and recommendations. This is a typical scenario in the medical universe which can be vexing to patients and their family.
It's another in a long history of TV networks placing their MD-journalists-contributors on the air in a conflict-of-interest situation.
Let me suggest that we put aside what might be insulting – to anyone. Journalism’s credibility – and the integrity of the information – is what’s at stake. That’s why journalism codes of ethics emphasize the phrase about avoiding conflicts real or perceived.
When patients come in with three inches of printouts, I know I’m going to have a good conversation. But they’ve also almost always terrified themselves beyond need.
I’d like to see more patients have more empathy for doctors.
Then I remember a visiting palliative-care physician's words about caring for the fragile elderly: "We forget to ask patients what they want from their care. What are their goals?"
As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.
Her husband died peacefully at home, and it felt like the right thing for everyone.
"John liked you," she says.
Specialists in particular, are known to demonstrate unwarranted clinical certainty. They have trained for so long that they begin too easily to rely on their vast knowledge and overlook the variability in human biology.
Specialists are susceptible to diagnosis momentum: once an authoritative senior physician has fixed a label to the problem, it usually stays firmly attached because the specialist is usually right.
We don’t know much about Stephen Pasceri, the fifty-five-year-old man who shot Davidson and killed himself in an exam room afterward.
What we do know is that Pasceri was frustrated with the American health care system.
doctors will live in a little more fear of their patients
Physicians at times were brusque and even hostile to us (or was I imagining it?).
why it has become so difficult for so many doctors and patients to communicate with each other
Even the most frustrated patient will come away with respect for how difficult doctors’ work is.
In case you missed it. Twitter chat re wearable tech and the MD-pt relationship summarized here: storify.com/colin_hung/per… #hcldr @Colin_Hung
“Physicians say they order unnecessary tests strictly out of fear of being sued, but our results suggest the story is more complicated.”
Ouch. "To put it bluntly, med school grads are too scientific, don't know how to take care of patients" wp.me/pBQAA-1bT @mellojonny
The most interesting work about what it means to be a ‘good doctor’ is being carried out be Charlotte Rees and Louise Montroux who are studying medical students conceptions and experiences of professional behaviour. Unsurprisingly perhaps, students tend to think about professionalism in terms of individual character and action, rather than more general terms, such the GMC ‘Duties of a Doctor’ or the succinct 2005 Royal College of Physicians definition of professionalism
What articles/blogs would you add? Teaching Doctors wp.me/p1sgji-gJ #medx
I bring articles and blog posts and other materials to help them understand the patient experience and, at times, to understand my complex health history (for more often than not, they need help with even the definition of some of my illnesses)
interactions within the health system following patient education could be fraught
Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field.
“The surgical method obviously involves more pain and scarring for patients, along with a higher rate of infection. The likely reason patients agree to undergo surgery when they could have a polyp removed endoscopically is they simply do not know better.”
Since doctors get blamed for just about everything, some would say that patients who take suppositories by mouth or eat an orange filled with insulin do so because they were not properly taught by their doctors (or nurses).
In Emergency, staff phoned a cardiologist to describe my condition. His response was relayed to me by the Emergency physician: ‘You can stay in the Emergency Department overnight but we will NOT give you a nitroglycerin infusion’ (in spite of that letter from my treating physician with instructions to do so). ‘We will not give you a holiday.
I really am on my own.
health communities and disclosure - fabulous #medx panel from @colleen_young @MeredithGould @SusannahFox @pamressler youtube.com/watch?v=rBdYLh…
Although anecdotal reports highlight some benefit (for example, intervening when a patient is blogging about suicide), real potential exists for blurring professional and personal boundaries.
The evening I convinced my boyfriend that he had leprosy defined a moment in our relationship that I can best describe as glorious.
I took more photos of the small red bumps and typed “rash” into Google images for the 10th time. That’s how a hypochondriac says, “I love you.”
So – sorry to the other physicians who disagree – but a great many of your patients are perfectly capable of researching their illness and in short order, knowing more about it than you do.
One study found that many physicians rate the know-it-all Googler as somewhere between “frustrating” and “irritating”.
“Some doctors felt that these patients were ‘overly assertive, undermined their authority, and did not show sufficient trust’ in their health care provider.”
When asked to calculate the probability that a positive screen result was actually correct, the majority of doctors surveyed at one Boston hospital got that number wrong.
Manrai believes that as more new medical tests enter the market, doctors must become more attuned to the complicated statistics behind a test’s reliability.
Excellent via @francesbell - ethical decisions are rarely one-off but an ongoing process bbc.co.uk/programmes/b04… #ukmeded
Checklists should supplement, not supplant, the dignity, caring, trust, and kindness that every patient needs.
Only by being hospitalized oneself, or spending hour and hours at the bedside of someone close to you, can you grasp that miserable combination of anxiety, frustration, boredom, discomfort, fear, and uncertainty that rolls through a hospitalization in seismic waves.
Most tweets and retweets contained misinformation, and misinformation had a much larger potential reach than correct information
It was easy to assume that patients would trust me from the outset. Why shouldn’t they? I had so many qualifications. But one of the strongest themes to emerge on Patient Opinion is that people build, or lose, their trust in you from the tiny fragments of evidence available
How about sharing our Ask Me 3 video with patients for #healthliteracy Month? youtu.be/B3EB-icaNKQ #ptsafety
we are mostly pretty good at maintaining “professional distance.” We “hmm” and “ah” and convey genuine care and connection, but then walk out the door and start fresh with the next patient.
our usual relationship with death is geared to be disengaged from any emotional buy-in
In a 1981 talk to an audience of physicians, Dr. Seldin deplored “a tendency to construe all sorts of human problems as medical problems” and thus within doctors’ duty and purview to fix. If it isn’t “relief of pain, prevention of disability and postponement of death,” Dr. Seldin said, why then, doctor, leave it alone!
In the opposite corner stands Dr. Gordon Schiff of Harvard’s Brigham and Women’s Hospital, who was issued an official reprimand a few years ago for egregious boundary crossing
Medical care can be compromised because objectivity diminishes to the same degree that feelings – both positive and negative – develop between a patient and a doctor.
However, the nature of the physician-patient relationship is such that the physician must take the responsibility for maintaining boundaries.
What separates doctors and patients is a disjointed and unnatural version of intimacy that in no way mirrors the important bonds that we form in real life non-medical relationships.
They had not gained this right through hours of conversation, years of support, or acts of selflessness.
The physician remains stone-faced, objectively detached.
Teaching the Rx (doctor's prescription) narrative: story as medicine. An outstanding slide deck from @JBBC slideshare.net/ennoconn/teach…
Physicians have been taught in medical school that they must keep the patient at a distance
the emotional burden of avoiding the patient may be much harder
But the real power of “Being Mortal” might come from the mere fact of Dr. Atul Gawande — a writer at The New Yorker, certified MacArthur Foundation “genius”, prize-winning and already best-selling author with 101,000 Twitter followers — having written it.
Thirty years ago, Tom Ferguson, M.D., wrote “The seven rules for better health” (July/August 1985). Dr. Ferguson’s “First Law” pointed out that patients provide their own illness care between 80 and 98% of the time.
I know that they are highly competent medical professionals. But the way in which they relate to me--as one human being to another--convinces me that they also understand the personal side of medicine, and that they will bring to my care not only the aim of curing but also the art of healing.
“If a patient realizes you are not genuinely concerned,” he says, “there will be long lasting consequences, such as no more trust.”
Not to scare you, or anything, but I’m worried about underdiagnosis, an under-reported complication of not getting screened for breast cancer.
The Center for Advancing Health works to increase people's engagement in their health care. We listen to patient perspectives. We translate what we learn into resources that help all of us participate fully in our health care and that enable policy makers and clinicians to support our efforts.
CFAH was a non-profit organization founded in 1992, supported by individuals and foundations and based in Washington, D.C. until its closing in December 2014.*
“A safety and teamwork culture is not something you can just implement, then walk away from and expect to continue,” Dr. Pettker said. “The really hard work is the daily work you need to do to keep it going.”
Given that medical errors now kill more than 400,000 Americans and are the number three cause of death in the United States, we need a greater sense of urgency about how broken IT systems are, and how we can fix them immediately.
While our hospital, like most others, technically had a system in place to identify and report patient safety issues, reality is much more complicated. It is virtually impossible to remain anonymous when reporting events, because often only a few people had direct knowledge of the event.
For a variety of reasons, including a heightened awareness of medical error and a focus on cost cutting, we have entered an era in which a narrow, demanding version of evidence-based medicine prevails. As a writer who likes to tell stories, I’ve been made painfully aware of the shift. The inclusion of a single anecdote in a research overview can lead to a reprimand, for reliance on storytelling.
I am very pleased to announce that this project has received a two-year, $1.3 million grant from the Laura and John Arnold Foundation.
It is frustrating enough when we over-read the results of epidemiologic studies and make the mistake of believing that correlation is the same as causation. It’s maddening, however, when we ignore the results of randomized controlled trials, which can prove causation, to continue down the wrong path.
That’s disappointing not only because it reduces people’s faith in science as a whole, but also because it may have cost some people better health, or potentially even their lives.
Ever asked the Internet what your symptoms mean and gotten a response that seemed wacky or totally off base? It's not your imagination.
We all know the “I’m sorry if you were offended” apology, which has the remarkable trait of condemning the objects of the apology.
One can mumble from a rehearsed apology written out on paper (another practice Luntz advised against) and not mean anything. One can apologize without changing behavior or culture, and without giving up power and expressing vulnerability.
Asking for forgiveness is much more difficult to fake or muddle through.
The next appointment was a visit of reconciliation. Graciously, she apologized for the outburst and I for my overconfidence. Reflecting back on this experience, I learned that I need to provide support to patients even after delivering good news.
Accept your fate as a hamburger – I mean patient. And be nice. Doctors, as busy as they are, are more likely to go out of their way for nice patients than for mean, nasty, overly demanding ones.
“Empathy” is perhaps the new buzz word in healthcare, but it is one I embrace and welcome with all my heart. It is the key to “connection” (the subject of my last blog). Perhaps it is too simplistic to say, but in my view, it really was the reason for all the outstanding, good, wonderful care Adam received from so many health staff during his life and the lack of it, really was the reason for the appallingly bad care he received.
After she was diagnosed with cancer in her left breast last fall, Chiara D’Agostino turned to two holistic healers, a psychotherapist, a massage therapist, a hospital social worker, a meditation class and two support groups to help her navigate a frightening new world.
One piece of advice she doesn’t plan to follow: her doctor’s.
A Harvard Medical School study found that online symptom checkers, such as WebMD and the Mayo Clinic, are only accurate about half the time.
The researcher asked her all sorts of questions about her symptoms until she apologized for taking up all his time. “Not a problem,” he told her, “I’ve never met a patient before.”
Some physicians and pharmacists worry the Internet is a mixed blessing, since there’s so much erroneous information out there.
Every year the ECRI Institute assembles a top 10 list of healthcare technology hazards that cause the most adverse events or, more frequently, near misses jeopardizing patient safety.
The court got it totally wrong, with the New England Journal of Medicine stating flatly that the law requires physicians to tell patients information that is “false and misleading.”
The contrast between the Court’s low regard for the speech of physicians and the high regard for commercial speech is striking.
Researchers at the Harvard Negotiation Project at Harvard Law School describe anchoring as a cognitive bias “that describes the common human tendency to rely too heavily on the first piece of information offered (the ‘anchor’) when making decisions.
people are more likely to be concerned about the risk of change than about the risk of failing to change and will be motivated to preserve current systems and beliefs. The status quo bias
After a year spent gathering facts and opinions from everybody who’s anybody in the world of aging, the White House on July 13 held a comprehensive session to discuss what needs to change in the United States.
Do patients really know what they're consenting to? For that matter, do doctors know exactly what they're asking, from any perspective but their own?
It's how you must have to talk if you're a professional death-delayer, except with some extra social media flourishes
It’s difficult to imagine a journal article and an editorial that could set the stage for what we intend to do on this site in 2015 better than this paper and this editorial in The BMJ this week – about problems with health related science news releases.
This AM the #HealthXPh community discussed 'Physicians & Empathy':a wonderful convo! ICUMI:transcript> ln.is/embed.symplur.… via @symplur
With the increased use of social media and ‘citizen journalism’, people are creating and sharing more information than ever before.
"Unfortunately, the Web is cluttered with people who really have no idea what they are talking about giving advice as if it were authoritative, and often that advice is colored by either an ideological agenda or a commercial interest," Yale's Novella writes on his blog. "The Food Babe is now the poster child for this phenomenon."
In other words, the Food Babe brand has become lucrative. Viewed through this prism, Hari’s antics are more understandable.
“Unfortunately, the people who are attracted to the lower premiums tend to be the ones who are going to have the most trouble coming up with all the cost-sharing if in fact they want to use their health insurance.”
I was bemoaning the fact that I was being forced to use hospital-designed templates for admission notes, rather than a dictation system or carefully crafted note of my own choosing. She looked at me, wide-eyed and said:
“You’ve worked without templates? How do you even know where to begin? Can you really dictate an entire note off the top of your head? I couldn’t live without templates.”
This whole patient satisfaction, or “patient experience” push just seemed like another ploy to pressure doctors to compromise themselves or take accountability for things that are beyond their control.
Twitter, Instagram, Facebook, Google forums, WordPress, chat rooms. Patients are flocking to these places, connecting with each other and giving advice about where to go, who to see and what to ask for.
Short for “funny-looking kid”, it is meant not as an insult, but as a reminder to watch for slow growth and mental retardation, which can accompany physical abnormalities.
But such candour may become a thing of the past as more hospitals and clinics make doctors’ notes available to patients and their guardians.
As one frightened Texas congressman memorably said, “Every outbreak novel or zombie movie you see starts with somebody from the government sitting in front of a panel like this saying there’s nothing to worry about.”
Distrust unsettles and contributes to fear. Fear can lead to panic, as well as to discrimination, scapegoating, and even violence.
Turns out most of us just aren’t that good at calculating risk, especially when it comes to huge natural events like earthquakes.
Risk perception is a vast, complex field of research.
#chw Jason (Camden) cites @Atul_Gawande 2012 #TEDTalk "How do we heal medicine," proposing "HC pit crews" dave.pt/1zhSBjM #chw
“I don’t think it’s fair,” proclaimed a tearful Gwendolyn Malingren. “I have been forced to expand the radius for my shopping for doctors and hospitals because they are charging me more based on those damn surveys about me. I have Chronic Hair Pain Syndrome, and sometimes I get cranky.
Beyond the obvious no-go areas of sex and abuse, the relationship can be fraught.
Doctors are divided on how strict the boundaries should be.
she abandoned the normal scientist–patient distance and regularly went out into the community to understand better the needs of those she was trying to help
“Some of them I became friends [with] and some of them are not there anymore. The list is very, very long…” She looks away.
Despite not being alone in her reaction to the breakthrough, the manifestation of mental illness was alarming and bewildering.
"We probably overestimate how much patients understand and underestimate how much we should tell them," she said.
For now, the only protection is a well-informed consumer. Read everything about your condition. Ask lots of questions about the rationale, risks, and benefits of every test and treatment. Expect clear and convincing answers. When in doubt, get second and third opinions.
to suggest you “never use Dr. Google” is both nonsensical and a non-starter. People will continue to use the world’s largest search engine to do what they’ve always done online — research a topic of interest.
This interview is one not to miss and he lays out the call to action for healthcare providers to step up and 'own' the social media space via curation of high quality content via an authentic voice that engages customers and patients in meaningful and relevant ways.
Leading American cardiologist, geneticist, author, and digital medicine researcher Eric Topol discusses the state of patient-centered and empowered healthcare, paternalism, and what the future holds for data and digital health.
This is the way that 21st century patients learn and connect in a medically complicated world.
Access to information represents one of the earliest and most powerful forces redefining doctors and patients.
I didn't set out to be a troublesome writer, but if that's what I've been, I am totally unrepentant.
What if you could text a doctor with a medical question at any time of day and get a quick, thoughtful response? No more haphazard Googling (swollen feet allergies; tick stuck in ear access to brain?).
As a patient, I’d say that sounds great. As a doctor, I’d say that sounds at best unsustainable, and at worst disastrous.
When I gingerly raised the possibility of a second opinion to my bare-chested friend, he demurred.
Which, according to a 2010 Gallup poll, is just what 70 percent of us do.
Not only does empathy seem to fail when it is needed most, but it also appears to play favorites. Recent studies have shown that our empathy is dampened or constrained when it comes to people of different races, nationalities or creeds.
In our view, empathy is only as limited as we choose it to be.
Patients told us they were worried about being labeled as “difficult” if they asked too many questions or dared to disagree with a recommendation from a physician. And if they were labeled “difficult” they worried that they would receive lower quality care in the future.
Welcome to the digital health chasm, that gap between what consumers want out of digital health and what doctors believe patients can handle at this stage in EHR adoption in doctors' offices and in patients' lives.
I have the video of Jack Nicholson's general in A Few Good Men asserting, "You can't handle the truth!"
I had already heard from the night doctor about how difficult and “micro-managey” the son was
But beneath that stood the true soldiers of fear, sadness, terror, despair, anxiety, grief, and love for his mother marching along beside him.
We spend more than three-quarters of healthcare’s spending on chronic disease where the majority of the decisions that most impact outcomes are not made by professionals. Rather, it’s the patient, family and caregivers who make the crucial decisions such as diet, exercise, lifestyle, filling prescriptions, properly adhering to prescriptions and so on. Further, when patients and caregivers are part of the decision process, they are more successful at adhering to prescribed programs.
In this discussion paper, we explore how patients view their role in team-based care and explain what is needed to foster effective partnerships of patients and health care providers to create high-functioning teams that meet patients’ needs. It stems from the view that it is important that the evolving health care system better serve patients and society and that team-based care and effective partnerships with patients across the care continuum contribute to achieving that goal.
Rachel’s physical scars are healing, and she can go on the long runs she loves, but she’s still grappling with the psychic toll—what she calls “the trauma of not being seen.”
In the clinical world, the term difficult is applied to a variety of patients: the noncompliant; the rude, abusive, and manipulative; the malingering; the mentally ill; the skeptical. In my case, I too frequently challenged my doctors with questions and too often chose a treatment that differed from what they’d recommended.
Patients are called “difficult” by those in the health care world for many different reasons, but it seems that families of kids with special health care needs face this label more often than most. When someone tells me my patient’s parent is being “difficult” what they often mean to say is, “time consuming,” “asks too many questions,” or “is too involved.”
By avoiding the medical test, Walker is part of a phenomenon referred to as information aversion, or the “ostrich effect” (which comes from the myth that ostriches, when in danger, bury their heads in the sand).
Recently, Dr. Peter Kramer published an intriguing, well-written, but poorly reasoned and potentially dangerous “thought piece” in the New York Times. His article, “Why Doctors Need Stories,” contains several logical flaws and erroneous arguments, but the overarching concept is a classic “straw man” argument.
The Mayo Clinic announced that e-Patient Dave deBronkart would serve as the 2015 Visiting Professor
the patient voice in medical education has received recent attention from the education community through Stanford’s Medical Education in the New Millennium
@ePatientDave TY for pointing out that anti-patient rant. It's among the most offensive pieces I've read on pharma & health care priorities.
Of course, like all such trends the importance of patient action groups will eventually fade. Once every possible cause has an equally well-oiled media machine, the impact of any individual special interest declines back to baseline.
I get impatient with physician essays that revolve around a physician encountering medicine as a patient, often for the first time. And with it comes suddenly this epiphany about life and the nature of medicine. And I always think, “Really? It took that experience for you to understand this?
a sense of this being hallowed ground. You’re entering sacred space and given the great privilege to see people in distress and to treat.
On some level, though, efficiency-empathy trade-offs are an inevitable and inherent tension in medicine — a function of busy hospitals with complex patients and limited personnel and resources. But I wonder also if this is a trade-off we too readily accept and whether the pendulum has swung too far toward the alter of efficiency.
I take great pleasure in introducing this very surprising video, based on an equally surprising (and highly entertaining) new book, Less Medicine, More Health: 7 Assumptions That Drive Too Much Medical Care by Dr. H. Gilbert Welch, who taught us all so much in his last book, Overdiagnosed: Making People Sick in the Pursuit of Health.
It's becoming an increasingly important question. The number of people fired over social-media posts is rising, and many employers look closely at a job candidate's online presence before making a decision.
Clinicians cannot and should not claim “ownership” over their patients. We are here to provide — treatment, information, assurance, and comfort.
An expert in government ethics said the emails reveal an overly cozy relationship between the nursing home lobby and the state's nursing home regulators who are supposed to be protecting the public.
Our data suggest that the lack of anonymity and associated risks of being identified as an individual with severe mental illness on YouTube seem to be overlooked by those who posted comments or uploaded videos. Whether or not this platform can provide benefits for a wider community of individuals with severe mental illness remains uncertain.
The surgeon and writer Atul Gawande argues that better systems can transform global healthcare by radically reducing the chance of mistakes and increasing the chance of successful outcomes.
The podcast for my third BBC Reith Lecture on the Future of Medicine is now up! bbc.in/1vzFl1H
In the 2014 Reith Lectures series, entitled The Future of Medicine, Dr Atul Gawande examines the nature of progress and failure in medicine. The first programme will be available to download on Tuesday 25 November.
Dr Google: 1) Disregard if anonymous 2) Check primary source 3) Check author qualifications 4) Discuss with your medical doctor
Dr Google: Child's death via online advice. Reported by @iEMPharmD @Nadia_EMPharmD
One of the cases presented featured a bizarre and tragic case of hyperacute sodium toxicity in a pediatric patient occurring as a result of the caregiver administering a sea salt slurry as homeopathic therapy for constipation. The caregiver followed instructions posted on the website livestrong.com, and as the case unfolded with the consequential effects occurring in this patient, we were captivated by the recounted events leading to the untimely death of the patient.
Most health apps, though, are classified as "informational" or "entertainment" to escape FDA oversight. But their marketing talk can send confusing signals.
For now, it's consumer beware.
How social media can change health professional education via @amcunnningham slideshare.net/amcunningham/h… via @SlideShare
Though “objective” measures of “quality” abound in medicine these days, getting meaningful feedback is actually quite rare. Getting it directly from a patient, rather than on a spreadsheet from an institution, is rarer still.
Can this ad campaign get people in Belgium to stop Googling their symptoms? wapo.st/1u6F3ne (HT @etkeld)
The key to cracking patient engagement isn’t better kinds of technology, it’s understanding patients better.
“One of the ways we’re trying to change that paradigm is to change the way our clinicians are thinking about this from ‘What’s the matter with you?’ to ‘What matters to you?'”
Patients who suffer injuries, infections or mistakes during medical care rarely get an acknowledgment or apology, researchers at the Johns Hopkins University School of Medicine report.
This Seattle newspaper’s article reported for the first time that neither the hospital’s officials nor the Department of Public Health Public Health (Seattle and King County, Seattle, WA) — which, along with the federal Centers for Disease Control and Prevention (CDC), had assisted the hospital’s investigation of the cause and source of its CRE outbreak beginning in 2012 — informed the more than 30 impacted patients (and their families) that this deadly outbreak was the cause of their infections and may have contributed, at least in part, to 11 patient deaths.
Refrain from establishing personal connections with patients or persons closely associated with them online, as this may not allow physicians to maintain appropriate professional boundaries and may compromise physicians’ objectivity. It is acceptable to create an online connection with patients for professional purposes only.
This doesn’t mean that other websites are always unreliable, but it’s good to find out who is sponsoring or paying for a commercial website (.com or .com.au) before relying on the information. You particularly want to know if the information favors the sponsor.
internet-assisted hypochondriacs have been around for years now
We worked with a team of medical doctors (led by our own Dr. Kapil Parakh, M.D., MPH, Ph.D.) to carefully compile, curate, and review this information
The company doesn't want the liability of even pretending to replace doctors, but instead will give sniffling, aching, or sneezing users a starting point to carry out more research.
Observers want to know: Does this nonalphabetic list represent Mayo Clinic's view of the most likely, highest priority, or most recommended approach to this disease?
Many physicians have been hesitant to join social media for real and imagined concerns. However, despite such concerns, the Mayo Clinic has embraced social media because “our patients are doing it, so this is where we need to be.”
From reading all of the dry documentation discussing social media, you’d struggle to come away with any real sense of why it’s so exciting and engaging.
In this antiquated view, the whole point of social media is to amplify the size of the megaphone that the editors already have.
They take the “social” out of “media” and leave most people with… well, little or nothing.
We found that, as has been previously reported, public trust in the leaders of the U.S. medical profession has declined sharply over the past half century.
WHEN we are patients, we want our doctors to make recommendations that are in our best interests as individuals.
Insurers, hospital networks and regulatory groups have put in place both rewards and punishments that can powerfully influence your doctor’s decisions.
Profiting from confusion. MT @onceuponA: "You’ve heard of HealthCare.gov. Now meet HealthCare.com" wapo.st/1w5q9hs
But health care advocates say there is the potential for massive confusion among consumers trying to find the government’s official site. Users who wind up there by mistake could miss out on subsidies that most would receive if they were shopping on HealthCare.gov
Thomson Reuters points out that these cases can be brought against the individuals responsible for creating the defamatory material - who may be unaware of the potential legal implications of their actions - rather than against the websites hosting the content.
The Georgia Court of Appeals ruled that the parents of a seventh-grade student may be negligent for failing to get their son to delete a fake Facebook profile that allegedly defamed a female classmate.
To speak of one’s activities as being part of a ‘patient engagement’ initiative conveys the reassuring secondary meaning of ‘something being built’, or ‘something getting done’ that is seldom borne out in fact.
A US study found that nearly three quarters of patients with advanced, incurable cancer believed that chemotherapy was being given with curative intent.
In other words, the more honestly you deliver bad news, the poorer your patient satisfaction ratings – sobering news indeed in an era of increasing measurement of metrics and accountability.
Discuss with patients the need to document doctor-patient communication in the medical record.
But what happens to the doctor-patient relationship? So I say, lets not be so stymied by legalism that we are afraid to befriend our patients.
Federal investigators were so struck by the hospital’s high catheterization rates that they launched a probe of its catheterization laboratory. Last spring, the hospital agreed to pay the government $41 million to settle allegations that, between 2006 and 2011, the hospital submitted millions of dollars’ worth of “false claims” to Medicare and Medicaid for performing angioplasties and implanting stents in “numerous” patients who did not need them, according to an FBI press release. The settlement terms allowed the hospital to deny wrongdoing in the case.
Section Two
An Appropriate Physician-Patient Relationship
These examples highlight the importance of proper boundaries within the physician-patient relationship. Even seemingly innocuous online interactions with patients and former patients may violate the boundaries of a proper physician-patient relationship.
If you could spend a day in the ER hearing patients like I do, I think you'd see in a way that you might not have before that health doesn't exist in a vacuum.
But when critics (usually men) want to de-legitimize my views, they often refer to me as a “mommy blogger,” relegating me to an imagined intellectual wasteland of sippy cups and Legos, where supposedly no serious thinker would be caught dead.
We moms have a long history of bringing about social change, and I’m proud to be a small part of that legacy.
I walked into another room, this time a young man was on his smart phone. “I’ve been researching this a lot,” he said, “and I think this is what’s going on with my shoulder.”
my immediate reaction was: I’ll be the judge of that
When I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.
I must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.
those who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.
this study is large (over a hundred docs and nearly 20,000 patients), and in three very different settings
The clinical team who cared for Mrs. McClinton conducted a thorough investigation and explained the error to her bereaved family. The leaders of the organization revealed the error in an email to the entire staff, emphasizing the flawed system and vowing to learn from the event.
As a result of the public accounting of the case, other hospitals changed their procedures, even before The Joint Commission added a National Patient Safety Goal related to labeling of medications on and off the sterile field in perioperative and procedural settings.
Dr. Keet comments, “As an epidemiologist who studies allergies and an allergist, I have to wholeheartedly disagree with this statement, and the problems with this statement have profound implications for the overall business model of Theranos.”
The task force identified these warning signs of medical child abuse: a “highly attentive parent” who is “unusually reluctant to leave his/her child’s side”; a parent who “demands second and third opinions”; a parent who “is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital”; and a parent who has “unusually detailed medical knowledge.” These warning signs accurately describe many, if not most, loving parents of medically fragile children.
Abiding by the unspoken rules of medical etiquette, I had quieted my internal alarms for more than 2 hours.
When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and rewarding acquiescence. Too often, this “good” means you agree with me and you don't bother me and you let me be in charge of what happens and when.
Tweeted by @helenbevanQuoteThe outstanding talk that @allyc375 gave at #confed2015: "From patient voice to patient leadership" youtube.com/watch?v=dnhjgY… #mustwatch
https://m.youtube.com/watch?sns=tw&v=dnhjgYGbEpk
7:33QuoteI'm a label queen
8:57Quote"Maelstrom of mayhem" is my particular favorite
"A Difficult Patient" (Seinfeld - about medical chart)
https://m.youtube.com/watch?v=ZJ2msARQsKU
Lol
Re: Communication and/or negotiation skills
Chapter 31
Communicating with the Difficult Patient or FamilyQuoteDifficult patients, defined as those who do not assume the patient role expected by the healthcare professional, are encountered in every settingQuoteLabels, such as difficult, hateful, or crazy, tend to follow patients and family members throughout the medical care process and negatively affect the way they are approached and treated (Lin et al., 1991).QuoteBy reinforcing and modeling professional behavior and avoidance of labeling, the team leader promotes high quality and safe, patient-centered care.
All people are affected by confirmation bias - we are more attuned to, and more likely to put weight on, signals and messages which confirm the beliefs and thoughts that we already have. This means that the over-consulters are highly attuned to the ‘Get worse quickly’ message, and the under-consulters are very sensitive to the “Choose Well (Don’t bother your doctor)” message.
Patients aren’t being Bad in doing this – they believe themselves to be the special cases, they fear the consequences of delaying treatment
"We're trying to have people be more careful with the personal information they divulge online," says Dr. Carpenter. "The problem is what is it you can say to them that will be an effective warning?"
How long should an organ be left in situ after a heart arrests, just to be sure that this condition is irreversible? Hospital practices differ in that regard.
Now, there are a number of other databases that bring together high-quality reviews on health issues and the Cochrane methodology has been applied to other areas of science — from education and crime to health systems questions. (See chart below.) These summaries are more accessible than ever before, not just for doctors, but also for the rest of us.
After 17 years in the gig, I've run into lots of patients and families who want to practice without a license.
I finally learned how to say "No, I am the doctor here and we will do it my way or you can find another doctor." It works over 99% of the time. Less than 1% of the time we part ways, both of us being happier.
Some doctors are scientists, but most, as all doctors know, are not
If you are a patient with acute meningitis then your recovery will depend mainly on what the doctors and nurses do, but if you have diabetes, hypertension, or chronic obstructive pulmonary disease it depends much more on what you do.
And the world is changing. People with illness are no
longer passive, and you need to know how to empower and
dignify and respect those who seek your care. People are
increasingly getting access to their digital health data. They
are writing notes, sometimes from their hospital beds, which
are getting in the charts. E-Patient Dave, a noted patient advocate,
wrote a book entitled, Let Patients Help.
@JBBC I asked a conf audience/300 docs: "How many of you read patient blogs?" -1 hand went up (the doc who invited me to speak) #HealthXPh
For their part, not all doctors want to cede control to patients who have far less medical knowledge or who may be relying on information they got from friends and the Internet. Also, many physicians don’t have the time for long discussions, and the healthcare system isn’t set up to pay for them.
“It’s a massive cultural change,” said Glyn Elwyn, who researches shared decision-making at the Dartmouth Institute for Health Policy and Clinical Practice. “It’s going from ‘I’m the expert, take my recommendation’ to ‘I am going to inform you and respect your wishes.’”
Many clinicians find incorporating evidence into their practice a daunting task. However, there are many groups and resources available for busy clinicians that provide useful evidence summaries and synopses.
There have been many examples of patients who have helped themselves and their doctors by becoming experts on their specific diseases. When the doctor-patient relationship and partnership is excellent, both parties benefit greatly. Again, it is about teamwork.
Health literacy moves at a very slow pace. The alternative health industry, worth many billions of dollars, marches briskly. It will always attract unguarded patients who will cling to the faintest promise of recovery without associated harm. Whenever money changes hands and the premise sounds too good to be true, the motto remains: Caveat Emptor.
Don't get me wrong: I'm enthusiastic about evidence, and think strong evidence is invaluable for medicine. But the EBM movement and brand - that's more complicated.
And leaders promoting evidence started to slip into just the kind of "eminence-based medicine" EBM sought to replace.
As I write this blog, research teams from the four corners of the globe are travelling to Sydney for the first joint conference of the International Shared Decision Making (ISDM) group and the International Society for Evidence Based Health Care (ISEHC).
you can follow us on Twitter through the hashtag #ISDMISEHC
Write down your current state and questions on paper (or digitally of course) at home.
"Doctors Complaints About Patients' Behavior"
[url]http://patients.about.com/od/doctorsandproviders/a/doctorcomplaints.htm[/url]QuoteSome doctors just don't want to work with empowered patients. They can't be bothered, or they are intimidated. Mary Shomon, the About.com Guide to Thyroid, reported that a doctor she used to see wrote "petite papier" (meaning "little paper" in French) on some patient records. The notation referred to the fact that Mary did much of her own research, and would compile questions ahead of visiting her doctor.
If you bring a list to a doctor's appointment, are you neurotic - or “seeking clarity, order, information & control"? nejm.org/doi/full/10.10…
The reminiscence I bristled at most, though, was about ladies — always they were “ladies” — with something he called la maladie du petit papier: the disease of the little paper.
I know that often patients, sensibly, bring lists to make the most of hard-to-schedule and ever-shorter visits with their doctors — indeed, in recent years they've been encouraged to do so.
When a patient pulls out that little piece of paper, I feel a shift in the exam room: the patient taking charge of the agenda, my schedule running late, the reins of the visit loosening in my hands.
An elegantly dressed older woman in one of my recent women’s heart health presentation audiences reminded me of my Mum. At the end of my talk, she raised a beautifully manicured hand and asked me:
“Carolyn, my doctor says I have a heart rhythm problem. What does that mean?”
Too bad she hadn’t whipped out this list while he was giving her this diagnosis. . .
“MRSA wasn’t diagnosed right away, but my family and I knew something was seriously wrong,” she says. But when Day asked questions, the hospital staff behaved as though she was overreacting. “One nurse said, ‘Your dad is just tired. He’s been through a lot,’ ” she recalled. “Even after MRSA was discovered, one of the doctors shrugged and said, ‘Well, these things happen. There isn’t much we can do about it.’ And though he was coherent throughout his illness, the doctors rarely spoke to him directly about his treatment; they came to my mother and me.”
In reality, though, the teamwork concept isn't working out too well. One reason is a chronic lack of time.
To be efficient, the doctor must control the conversation
The doctor, just as the patient, also experiences feelings during the consultation such as anxiety or anger
Before now, Google was sewer of health misinformation.
If you want patient input, you’re on your own. Doctors are good for certain kinds of information. Patients are also good for certain kinds of information.
I am a doctor’s worst nightmare.
What’s missing from online medical sites isn’t just good information; it’s all the context and expertise needed to interpret it.
A study of cancer patients showed higher patient satisfaction with care when physicians reacted positively and took the information their patients found online seriously, taking the time to discuss it with them. I know that, in my case at least, this approach helped to foster a better working relationship between my doctor and me.
As doctors, we place much emphasis on working with our patients to choose the right combination of interventions, and rightfully so. Yet I have seen that despite best intentions, patients and loved ones sometimes hear conflicting messages from caregivers about these plans.
Although medical knowledge is important, simply communicating amongst ourselves is a critical part of serving our patients – and one that is too often forgotten.
It’s journalists who tend to be blamed for this, accused of wilfully distorting and misrepresenting the science to generate headlines and click-throughs. That is unfair. Instead, let’s look at the scientists as the British Medical Journal has done. It has reviewed press releases on health stories issued by the main universities in 2011, and tracked the subsequent news stories. It found that many of the exaggerations and inaccuracies in the news reports originated in the press releases.
Now with blogs, Twitter, and comments under articles, what you can see is everybody can talk back. On top of that, not only can people more easily find a platform to put things right when they’re wrong and also explain how they’re wrong and how to understand science better, but also anybody who is interested in something, who is sufficiently motivated and clueful, can go out and find out about it online.
Since PolitiFact began in 2007, we’ve rated 47 percent of shareable Facebook memes as either False or Pants on Fire, compared to just 20 percent that were either True or Mostly True. The track record of chain emails is even more dismal. A full 83 percent of chain emails have been False or Pants on Fire, compared to just 7 percent that were either True or Mostly True.
I tweeted into the fray: ‘Not all patients can be heroes. For those with mental health problems, it is hard to ‘choose’ to change your life’.
Is ‘patient as super-hero’ set to replace ‘patient to be rescued’ as the modern medical narrative?
One of my favorite stories is set in 1994, when a man actually had to impersonate his doctor to gain access to a medical journal article about a surgical procedure he was being urged to consider.
After a three-day inpatient admission, at the time of discharge, she still didn’t know whether the mass was cancer or what her next steps for diagnosis and treatment would be. So she spoke up and asked to speak to her physician again after the nurse handed her the discharge instructions.
She was shocked when she later received her bill and was slapped with a $300 surcharge on her hospital bill for a “delayed discharge” because she took longer than the 30 minutes that the hospital had allotted for patients to be discharged. Still, no clear answers were provided.
I know I’ve written about this before on the blog, but today I came across two infographics which are worth sharing on how to spot medical quackery. Ben Goldacre, author of Bad Science, classifies science reporting as falling into three categories – wacky stories, scare stories and “breakthrough” stories, the last of which he views as “a more subtly destructive category of science story”.
Watchdogs a la carte: @hildabast @laikas @murzee @jordanrau @garyschwitzer @bengoldacre @FactTank Why: bit.ly/1DOxRiM
The challenge, of course, is to avoid tokenism and achieve authentic patient participation, which embodies partnership and yields dividends for all.
One point they firmly agree on is that patient delegates are different to other delegates and their participation in meetings must be funded.
Jack Warner, a former vice president of world soccer’s governing body, FIFA, defended himself against corruption charges on Sunday by citing an article from The Onion, apparently unaware that it was satire.
Onneken wanted to do it gonzo style: Reveal the corruption of the diet research-media complex by taking part.
Not to mention that a Google search yielded no trace of Johannes Bohannon or his alleged institute.
Here’s a dirty little science secret: If you measure a large number of things about a small number of people, you are almost guaranteed to get a “statistically significant” result.
It’s an amazing read, and it’s certainly captivating. It’s also shockingly unethical. I don’t know whether to love it or hate it.
Schwitzer is a fan of Bohannon's message – but he worries that it will get lost in our rapid churn, 24-hour news cycle, and the journalists who need to be schooled in proper nutrition science reporting will have already moved on to the next thing.
there are others who aren't taking kindly to Bohannon's work
In Germany, if a doctor (or certain others) is going to do research in people that might affect their mental or physical health, or with identifiable data, she or he must first lodge an application to an ethics committee.
As a consequence, scientists and policy makers are now scrambling to set up guidelines for how much information from such testing to share with patients and for how best to help them deal with the inevitable incidental findings.
Wanna know where I get my reliable #allergy #foodallergy #asthma info? It's NOT Google!
#FF @AAAAI_org @ACAAI @kfatweets @AAFANational
Until they insult your research…
Don’t tell me about what you found on Google.
Why do the recommendations by physicians to patients so often contradict the best science?
The results reinforce that hype creep occurs at all levels of the news chain — beginning with the scientists themselves, the organizations wishing to promote the work and the media outlets that report on it.
Conclusions Recommendations made on medical talk shows often lack adequate information on specific benefits or the magnitude of the effects of these benefits. Approximately half of the recommendations have either no evidence or are contradicted by the best available evidence. Potential conflicts of interest are rarely addressed. The public should be skeptical about recommendations made on medical talk shows.
London-based BuzzFeed reporter Jamie Ross writes, “The NHS Is Calling Out Journalists On Twitter For Getting Their Facts Wrong.”
The NHS contracts with a company called Bazian to look “Behind the Headlines” on health news stories.
Address of @picardonhealth to new @um_medicine MDs. What patients long for: "Not just care, but caring." bit.ly/1F4CWRp #medicine
I think the line that matters most in the oath is this: “Whatsoever house I may enter, my visit shall be for the convenience and advantage of the patient.”
What does your patient want? What are his or her goals? Those are the questions that must guide your practice.
Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?
patients do not have the medical expertise to judge the quality of physicians' decisions in the short run and are neither capable of evaluating the outcomes of such decisions in the long run
Here’s the thing: patients KNOW STUFF. Rather than telling us to shut up and stop Yelping, how about you recommend *listening* as a cure for what ails US healthcare?
We can’t just talk about a commitment to patient centred care– we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient. The question now is how do we start to bridge that divide in tangible and meaningful ways?
My objection to his article has nothing to do with online reviews and has everything to do with the implication that all patients are ignorant when it comes to their own medical conditions and completely incompetent to make medical decisions. This is a ridiculous implication.
I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better.
Doctors beware: don’t expect flattery.
We want to identify the physician, care team, and hospital that will include us in the decision making process. The team that will explain all treatment options with me, will address and answer all of my questions, and that will share and distribute to me my lab results, my physician notes, as well as my images.
Patients are the only ones qualified, capable, and knowledgeable to make those recommendations.
I spoke with Niam Yaraghi (Center for Technology Innovation, The Brookings Institution) and Casey Quinlan (Mighty Casey Media) following their interesting back-and-forth online on the question of whether and how patient reviews of physicians can add value.
What’s clear is that patients are standing up and shouting (and testifying and lobbying and advocating) to get a bigger voice in health care reforms. What is muddy is just how that’s going to work.
Interestingly, or perhaps “understandably (not)” as payments to physicians were cut, indications for surgery seemed to go up. Patients with knee pain which would likely improve without surgery were being told they “needed” surgery .. and seemingly for all the wrong reasons.
Feeding the issue is the mechanistic, factory style many practices have been forced to adopt.
Still concerned after her interaction with her son's pediatrician, Williams took her son, who had a pre-existing heart condition, to a cardiologist, who suggested Lyme disease could be behind the boy's symptoms. Williams returned to the pediatrician and requested additional lab work based on that possibility, but, she says, the request was denied.
Two weeks after his initial appointment, the 5-year-old received a diagnosis, not from his doctor but from an urgent care center – he did, in fact, have Lyme disease.
For reasons I don't understand, I blurted, "Diabetes is a terrible disease. . . . as is rheumatic fever," to which the daughter said, "As is cardiomyopathy." I smiled because this layperson knew as much about the treatment and physiology of cardiomyopathy as any healthcare provider. We were both teacher and student of that process from two very different perspectives.
Rather than leaving the answers to Google and Yahoo, doctors have a responsibility to preemptively educate our patients and families on the best and most reliable online resources before a question comes to mind. So instead of trusting a search engine, patients and parents can click their way directly to a trusted source.
When patients come pre-armed with their diagnosis and treatment plan, they run the risk that their physician will stop listening for the important diagnostic details. If I’m busy and you aren’t listening to my advice, I may not have time to argue with you.
I don’t know about you, but the response in my head sounds like, “Why exactly are you here if you don’t trust my training, expertise, and judgment? We are wasting each other’s time.”
In addition to their vicious commentary, the doctors discussed avoiding the man after the colonoscopy, instructing an assistant to lie to him, and then placed a false diagnosis on his chart.
Round and round we go. Wheel of annoying patients we go. Where it’ll land, nobody knows
Here it's holier than thou. Too much internet use, a little too much information, kind of
Tweeted by @HealthNewsRevu
Stop blaming “demanding patients” for driving up health care costs
[url]http://www.healthnewsreview.org/2015/02/stop-blaming-demanding-patients/[/url]Quote“…dealing with patients who inform themselves about their conditions online has changed the usual medical relationship, according to Anthony Back, a cancer specialist at the Seattle Cancer Care Alliance.
“A lot doctors view this negatively as in, ‘If only those patients didn’t have this information my job would be simpler,’”
Her increasingly urgent pleas for help were met with an admonishment to “stop Googling” her symptoms.
Just months later my “cured but anxious” patient lay dying
Mostly, what medics must accept is that searching for more information is a natural instinct, not a slight against one’s doctor.
“May you cure sometimes, treat often, comfort always.”
And that kind of--I think the--and you are right about this--the empowerment of patients through Google and medical access online to find out stuff, that people of course desperately do when they are in trouble, is changing that culture already. Because people are taking, they are challenging wisdom in ways the didn't before. Because they can.
But the premise is that patients are smart. And today, unfortunately, they are regarded as the Rodney Dangerfields, as I wrote--'Don't get no respect.'
laboratories across the nation aren't following basic policies and procedures designed to ensure the accuracy of test results
Accrediting organizations that police labs on behalf of the federal government are allowed to keep their inspection reports private. In fact, federal law requires it in most cases.
Public expectations about screening don’t always match what screening programmes can deliver.
We have drawn up this guide: first we asked specialists (clinicians and researchers) how screening programmes are evaluated and we investigated what people say about screening in day-to-day life. We then worked with the clinicians and researchers to pick out where discussions about screening are going wrong. We also liaised with some helpful members of the public
“One doesn’t know quite what it is that one wants to get off the chest until one’s got it off.” — T. S. Eliot bit.ly/1oDzGIC
The lawsuit said that from 2008 to 2012 the charities, through aggressive fundraising, raised $187 million in cash and spent less than 3% of that on true charity related to cancer. The rest went to fundraising, high executive salaries and personal expenses.
The well-publicized paper, co-authored by Columbia researcher Donald Green and UCLA graduate student Michael LaCour, suggested that opponents of same-sex marriage were more likely to change their minds after talking with gay and lesbians canvassers. But, as Retraction Watch reported last week, LaCour faked the data.
evidence itself never tells you what to do, never. It’s always evidence in the context of values and preferences
CrowdMed
The volunteer diagnosticians are students, retired doctors, nurses and even laymen and women who enjoy pitting their wits against a good medical mystery.
It will be interesting to see whether the collective wisdom of practitioners and enthusiastic amateurs prevails over an algorithmic synthesis of the world’s medical literature.
I panicked and meekly whispered, “I need wet-to-dry dressings. That is how they did it at the last hospital.”
The nurse looked at me incredulously and retorted, “I have been a nurse for twenty years, so please just let me do my job.”
Later that day, when her father developed respiratory distress, she was yelling orders to the nursing staff — despite our team’s pleas to let us do our work.
She thanked the team for caring for her father, inviting her to rounds every day, and allowing her to suggest changes to Mr. U’s treatment. The difficult family member was just a concerned child.
"I remember having doubts about it because the doctor said I was fine, and that he knew what he was talking about," she recalled. "But, on the other hand, it didn't feel right and thought I should get a second opinion."
Several recent studies found that as many as 60% of patients who sought a second opinion received a major change in their diagnosis or treatment.
It is a common lament that people’s fears of some things — vaccines, child abduction, genetically modified food, anything with the word "chemicals" in it — are excessive and fly in the face of the evidence. This lament is often raised loudly by science journalists, who blame these misperceptions on a lack of science education, or fear-mongering by advocates, or, frequently, on people being irrational. Yet excessive fears like these that have become widely accepted in society as basic truths have another fundamental cause; journalism itself.
And in doing so she typifies what the majority of journalists, including many science journalists, do with their reporting about any risk (and I did too often during my 22 years as a TV reporter). They play up the scary, and play down or omit anything neutral or reassuring, and in the process they create and reinforce public fears... of vaccines, or ‘chemicals’, or child abduction, or radiation.
“The storytelling is really where the medicine is,” she said. “There is nothing that I can think of, there is no kind of testing, there is no sort of physiology or pharmacology that is more essential to clinical skill than the ability to elicit, interpret and communicate someone else’s story.”
we’re hearing from patients that they want to feel that their stories are being heard
Ultimately, no single study is perfect. Whether it’s a randomized trial or a nonexperimental one, one can never be absolutely sure study findings are valid and applicable to you. The best bet is to wait, if you can, until evidence accumulates from many studies using a range of methods and applied to different populations.
A group of UK bloggers get their allergy & asthma questions answered by @senseaboutsci Allergists and researchers bit.ly/1Nt5gTA
I think we have to understand that there is often a corporate separation between the public affairs side of the house and the clinical governance side of the house in the hospital world. The former takes money and creative thought. The latter takes an unceasing commitment to clinical process improvement and especially to transparency.
This is an uncomfortable truth about health care that people tend to learn the hard way. The story usually goes like this: You get sick or otherwise put your health care to the test. You suffer through sub-optimal health care and learn first-hand about the pervasive flaws. And so you slowly become a savvier wrangler of the health care system, which is sometimes called being an engaged and empowered patient.
By listening to each other, we can understand the pain points on both sides and recognize when we need to revisit existing policies, practices, and systems.
Even though the foundation is one of the single most powerful actors in global health, remarkably few people ever had anything negative to say about its work outside of skeptical academics.
Another explanation for the silence, Harman argues, is that "everyone is scared of challenging Gates and the foundation's role because they don't want to lose their funding."
"The question of accountability and transparency is not unique to the Gates Foundation, but is a concern about the role of philanthropy generally."
I, like many parents in my shoes, have taken the time to learn the language you speak, read the same articles you read, ask many professionals and other parents for their experience, interpretation, etc. So please don’t treat me like I’m some lay-person new to this environment. And even if I was, don’t insult the capacity of a mama bear to understand a completely foreign subject when her child’s life is at stake.
And even most physicians - just the people we often rely on to inform us - don't understand enough about the pitfalls that lead us to jump to conclusions about early detection too, well…early.
It’s ironic really. The lure of prevention is freedom from disease. But it has become a key driver of over-medicalization of our lives and a growing shadow of disease angst when we’re the healthiest generation the world has ever seen.
I can tell you that on many occasions, I have seen that online (particularly Twitter) can have a meaningful impact that is often dismissed for lack of scientific rigor
I have seen new frontiers of vibrant, online communities that began with patients talking to patients and now include active discussions among prominent physicians.
Yeah, online matters.
Any one scientific study is not enough evidence to change behavior/medical advice/etc.
Do any credible educational, research, and professional organizations with a medical board comment on the topic? In the food allergy world, this means FARE, AAFA and KFA, FAACT, AAAAI, and ACAAI.
Also, I'm free to be critical of those respected sources. For instance, I am a huge cheerleader for FARE's food allergy action plan (ECP), but I'm probably a huge pain in their rear concerning sesame. Another example, if I just go to the FDA site to learn about sesame labeling, I would not be able to safely figure out how to read a label for sesame.