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.
Of course, no argument from me there. Also, ER training.
See - that's just the kind of thing that you could talk with them about.
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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.
"Playing Lawyer Online – Be Wary of Non-Lawyers Bearing Legal Advice"
http://allergylawproject.com/2015/09/21/playing-lawyer-online-be-wary-of-non-lawyers-bearing-legal-advice/---
"Current Topics in Food Allergy Law"
http://community.kidswithfoodallergies.org/blog/current-topics-in-food-allergy-law-video-and-resourcesKids 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.
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"Trust and Food Allergies"
https://ohmahdeehness.wordpress.com/2016/05/06/trust-and-food-allergies/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.
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BTW, I think this "trust" topic is really interesting.
I'll link this ...
"How to trust intelligently"
By Onora O’Neill
http://blog.ted.com/how-to-trust-intelligently/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.
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Vulnerability and Trustworthiness
Polestars of Professionalism in Healthcare
DAVID BARNARD
https://www.academy-professionalism.org/PDF/David_Barnard_Vulnerability_and_Trustworthiness.pdfWelie 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.
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Re: BiasI 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.
Re: Bias"Poet and Philosopher David Whyte on Anger, Forgiveness, and What Maturity Really Means"
https://www.brainpickings.org/2015/05/15/david-whyte-consolations-anger-forgiveness-maturity/
The 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.
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"Philosopher Martha Nussbaum on Anger, Forgiveness, the Emotional Machinery of Trust, and the Only Fruitful Response to Betrayal in Intimate Relationships"
https://www.brainpickings.org/2016/05/03/martha-nussbaum-anger-and-forgiveness/
Trust, 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.
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In patient communities like this, it's really interesting to think about how trust happens ... when I first started out online, I never thought that I would form such strong bonds or trust so much ... people named CMdeux or Ninja or Boo, etc. ... and on the other hand, sometimes those with credentials like MD have let me down or have given me what I consider (maybe I'm wrong) to be bad advice.
Now my reminder - find yourself a good allergist and get your medical advice from the doc ...if you don't trust a doc, find another doc that you do trust ... there is a lot of dangerous info on the Internet.
Let me link again ...
Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergyWhat 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:
Herein 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.
Same theme ... integrating FA legal expertise w/places like FAS ...
So interesting, these topics/ideas are to me.
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“You get to know the people and whether they’re talking sense or not”: Negotiating trust on health-related forums
Ellen Brady, Julia Segar, Caroline Sanders
http://www.sciencedirect.com/science/article/pii/S0277953616303136This 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.
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This post doesn't feel complete without talking about Robyn O'Brien since she was mentioned in Homa's post. This is not an attack on her as a person, but critically looking at some of what she says ... & btw, none of us is perfect ... if anybody has criticism of FA stuff that I have posted about, I am very open to hearing that criticism ... it is likely that some stuff I've posted about is not correct or could be improved.
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Tweeted by @AllergyKidsDoc
"We are not saying that correlation is causation" That's exactly what you're saying. Without evidence, I might add.
about
Tweeted by @foodawakenings
Food Allergies in America: A life threatening allergic reaction sends someone to the ER once every 3 minutes. robynobrien.com/food-allergies…
"A Growing Epidemic: Food Allergies in America"
https://robynobrien.com/food-allergies-in-america/The potential of genetically engineered foods to cause allergic reactions is a big reason for opposition to these crops.
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Tweeted by @jennysplitter
"Science Is My Scaffolding: Why I Won’t Share That Robyn O’Brien Post"
http://groundedparents.com/2016/05/04/dont-share-robyn-obrien-posts/?utm_content=buffer4cb67&utm_medium=social&utm_source=twitter.com&utm_campaign=bufferreference 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.
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Here's our FAS GMO thread
GMO---
Re: BiasThat 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.
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Just some random thoughts ...
Is it right/ethical for orgs w/ med adv boards like FARE to sponsor events like the Food Allergy Blogger conference if they have speakers like O'Brien who advocate FA views that docs do not see as backed by scientific evidence?
The Internet is open ... info is not just going to flow from top-down (docs to patients) anymore. How do we maximize the good in this (allowing patients to share stories, to be involved in research, to critically challenge the expert narrative in a legitimate way in some cases, giving patient priorities greater weight at the patient orgs, letting patients benefit the community with their unique knowledge & skills) while at the same time minimizing the negatives (pseudoscience, fear, dangerous advice, etc.) ....
There is a balance to be had & I don't think we as a community have entirely figured these issues out yet.