How private should health info BE, anyway??

[CMdeux]

http://www.natlawreview.com/article/dire-consequences-non-participants-lead-to-dire-consequences-wellness-program-under-

http://www.natlawreview.com/article/eeoc-files-third-lawsuit-challenging-employer-wellness-plan

I know that DH's company engages in practices VERY much like those at Honeywell.  In other words, they pressure spouse and family participation pretty strongly, and may in some instances all but MANDATE it for the employee.

What I'm wondering is this-- at what point does this become intrusive in terms of interference with doctor-patient relationships?  I can see all too well how it can; DH, for example, has been "counseled" about both mental health and diabetes-related issues by program nurses, and knows of at least one fellow employee who was virtually hounded by these people after expressing concern about affect and stress which was driving alcohol consumption.  It was VERY aggressive, and not at all private, given that the weekly phone calls took place in a cube farm work environment (think Dilbert).

I also wonder if employers such as Honeywell will at some point opt to FORCE (or at least pressure) patients to comply with a one-size-fits-all treatment plan.  That is, could someone like my DD be, in another five years, [pressured to participate in desensitization that neither we nor her expert physician think she is a good candidate for??

 

Could someone with Type II diabetes be forced into gastric banding surgery?

[LinksEtc]

Tweeted by @ElaineSchattner

"A Worry In Theory, Medical Data Privacy Draws A Yawn In Practice"
http://www.npr.org/blogs/health/2014/11/20/364059879/a-worry-in-theory-medical-data-privacy-draws-a-yawn?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social

Still, there was some variation in the responses, with 22 percent of people in households making more than $100,000 a year worried about how employers treat the data.

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Tweeted by @charlesornstein


"Len's Lens: Privacy and Personal Health Information"
http://www.medpagetoday.com/Blogs/ThroughLensLens/55194

what I read was -- to say the least -- disturbing. When it came to sharing my health information, there were no middle options: either it could be shared with other exchanges, vendors, consultants, and others nationwide, or I wouldn't be able to get access when I really needed it -- especially in an emergency situation.

&


"New Jersey Psychology Practice Revealed Patients’ Mental Disorders in Debt Lawsuits"
http://www.propublica.org/article/new-jersey-psychology-practice-patients-mental-disorders-lawsuits-debts

The psychology group to which he’d confided his innermost feelings had included his mental health diagnosis and treatments he received in publicly filed court documents.

The greatest fear of many patients receiving therapy services is that somehow the details of their private struggles will be revealed publicly.

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"Policing Patient Privacy"
https://www.propublica.org/series/patient-privacy

[LinksEtc]

Tweeted by @modrnhealthcr

"Researchers seek medical data use without patient permission"
http://www.modernhealthcare.com/article/20141126/NEWS/311269950?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=social

The American Medical Informatics Association is asking Congress to amend a central federal healthcare privacy rule to give medical researchers access to patient records without their consent.

[CMdeux]

   on the one hand.

On the other, aggregate data is (generally) not identifiable... as long as it's stuff that is COMMON enough.  That's the sticking point, really.  If you are a rare disease patient, there is no such thing as "aggregate" data.

As we've all seen (at least if you've followed news stories on this stuff for a decade, as I have)-- even in publications where the information is ostensibly "anonymous" the tabulation of food allergy fatalities lists a few gender/age/allergen/method of exposure combos that I know the names of.

For example--

13y F milk allergy-- cafeteria cross-contamination, at school.


That's Sabrina Shannon. 

It's distressing to me to know their names.  It's distressing because it feels dehumanizing to see them reduced to table entries in a paper... on the other hand, if I can figure out who those people are, then that points out the problem with the idea of not requiring consent for aggregated or anonymous use.

Anyone who is in a highly unusual (e.g. publication-worthy) situation as a patient-- that is, warranting a case study-- MUST give consent.  IMO.  As AI/data mining becomes more sophisticated, also, that line needs to be moving toward protecting privacy, not stripping it away.

[LinksEtc]

Tweeted by @Asthma3Ways

"When should your genetic information trump your right to privacy?"
http://www.pri.org/stories/2014-12-07/when-should-your-genetic-information-trump-your-right-privacy

“Let's say a researcher is doing a genetic study ... and they discover that their participant has a variant of the BRCA gene, associated with higher risk of breast and ovarian cancer,” says Susan M. Wolf, the McKnight Presidential Professor of Law, Medicine and Public Policy at the University of Minnesota. “They go to that person and say, ‘We think it's important for you to know this, but we're also concerned about your sister, or your brother, and other members of your family.’"

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Tweeted by @ProPublica

"When a Patient’s Death is Broadcast Without Permission"
http://www.propublica.org/article/when-a-patients-death-is-broadcast-without-permission?utm_medium=social&utm_campaign=sprout&utm_source=twitter

No one in the Chanko family had given "NY Med" permission to film Mr. Chanko's treatment at the hospital or to broadcast the moments leading up to his death.

Such moments — indeed, all of the intimate details of a person's health — are supposed to be shared only with a patient and whoever they designate, under a federal law known as Hipaa.

--------------------------------



Tweeted by @charlesornstein


"New York Legislation Would Make It a Felony to Film Patients Without Prior Consent"
http://www.propublica.org/article/new-york-legislation-would-make-it-felony-to-film-patients-without-consent?utm_medium=twitter&utm_source=twitterfeed

State Assemblyman Ed Braunstein, a Queens Democrat, filed the bill last month in response to a ProPublica article, published in January with the New York Times.

Lawyers for New York-Presbyterian have argued that the state does not recognize a common law right to privacy and that any privacy right Chanko had ended upon his death.

--------------------------------



"Federal Ruling Could Outlaw ER Documentaries and Hospital Reality Shows"
http://www.highlightpress.com/federal-ruling-outlaw-er-documentaries-hospital-reality-shows/30372/sdavis?utm_content=bufferff3a8&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

The era of hospital reality TV shows and ER documentaries may be coming to an end, following a landmark ruling that saw New York-Presbyterian Hospital slapped with a $2.2 million fine.

they insisted that the scenes were filmed as a means by which to “educate the public and provide insight into the complexities of medical care and the daily challenges faced by our dedicated and compassionate medical professionals

[LinksEtc]

"Your Medical Records Are in Danger"
https://psmag.com/your-medical-records-are-in-danger-dc0422be5f14#.lxn5kfgzg

Over the course of my reporting, I’ve talked to hundreds of people who said their medical records were hacked, snooped in, shared, or stolen. Some were worried about potential consequences for themselves and their families. For others, the impact has been real and devastating, requiring therapy and medication. It has destroyed their faith in the medical establishment.

-----------------------------


Tweeted by @EricTopol


"Privacy is dead and it’s never coming back, Harvard professors say"
http://www.rawstory.com/rs/2015/01/privacy-is-dead-and-its-never-coming-back-harvard-professors-say/

Imagine a world where mosquito-sized robots fly around stealing samples of your DNA.

Sophia Roosth said intelligence agents were already asked to collect genetic information on foreign leaders to determine things like susceptibility to disease and life expectancy.

[LinksEtc]

Tweeted by @CarlyRM


"A Keynote Discussion on Using Data to Increase Patient Engagement - Stanford Medicine X 2014"
https://m.youtube.com/watch?v=N7f1O2MAliw


16:53

It is really hard for patients to donate their own data in meaningful ways.

-----------------------------------------



Tweeted by @rvaughnmd


"As I lay dying"
http://www.latimes.com/opinion/op-ed/la-oe-becklund-breast-cancer-komen-20150222-story.html

there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn't help them.

In the Big Data-era, this void is criminal.

[LinksEtc]

"How Data Brokers Make Money Off Your Medical Records"
http://www.scientificamerican.com/article/how-data-brokers-make-money-off-your-medical-records/

But the data brokers also add unique numbers to the records they collect that allow them to match disparate pieces of information to the same individual—even if they do not know that person's name. This matching of information makes the overall collection more valuable, but as data-mining technology becomes ubiquitous, it also makes it easier to learn a previously anonymous individual's identity.

In researching the medical-data-trading business for an upcoming book, I have found growing unease about the ever expanding sale of our medical information not just among privacy advocates but among health industry insiders as well.

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Tweeted by @DrLeanaWen


"Online Health Searches Aren't Always Confidential"
http://www.npr.org/sections/alltechconsidered/2015/06/08/412893469/online-health-searches-arent-always-confidential

In the privacy of a doctor's office, a patient can ask any question and have it be covered under doctor-patient confidentiality. But what happens when patients want to search possible symptoms of a disease or ailment online?

[LinksEtc]

Tweeted by @SeattleMamaDoc

Big, meaty report yet worth a peek re: thinking on how we share @jsperber @SusannahFox @pamressler @colleen_young twitter.com/Amanda_Lenhart…

---


@Amanda_Lenhart

The Tradeoff Fallacy
https://www.asc.upenn.edu/sites/default/files/TradeoffFallacy_1.pdf

69% do not know that a pharmacy does not legally need a person’s permission to sell information about the over-the-counter drugs that person buys.

When it comes to protecting their personal data, our survey finds those with the wherewithal to accurately calculate the costs and benefits of privacy are likely to consider their efforts futile.

They have slid into resignation—a sense that that while they want control over their data world they will never achieve it.

[LinksEtc]

Tweeted by @danmunro


"When Does Workplace Wellness Become Coercive?"
http://www.npr.org/sections/health-shots/2015/06/24/417100353/when-does-workplace-wellness-become-coercive

asking workers to undergo medical exams or give personal medical information is sharply limited by another law, the 1990 Americans With Disabilities Act, which prohibits such questioning — except under limited circumstances, such as by voluntary wellness programs

Medical questions that an employee may only decline to answer if he or she agrees to pay thousands of dollars more for health insurance can hardly be called 'voluntary'

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Tweeted by @Docweighsin


It’s Official: Employee Wellness Is a “Scam”
http://thedoctorweighsin.com/its-official-employee-wellness-is-a-scam/?utm_content=buffer1c3e1&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

The right-wing Federalist has railed against it, the New York Times‘ Incidental Economist bloggers have repeatedly pointed out it doesn’t work, and a syndicated Los Angeles Times columnist anointed it with the word used in the title above: “scam.”

[LinksEtc]

Tweeted by @chrissyfarr

"Kuwait Makes DNA Testing Mandatory For Everyone"
http://ww2.kqed.org/futureofyou/2015/07/08/kuwait-makes-dna-testing-mandatory-for-everyone/

In response to a recent ISIS terrorist attack, the Kuwaiti parliament passed a law, last week, requiring every Kuwaiti citizen and foreign resident to have their DNA tested and the results added to a new database.

-------------------



Tweeted by @danmunro

"Mandatory Genetic Screening By A Government Agency. What Could Possibly Go Wrong?"
http://www.forbes.com/sites/danmunro/2015/03/29/mandatory-genetic-screening-by-a-government-agency-what-could-possibly-go-wrong/

The actual headline in the Saudi Gazette (dateline 3/30/2015) is a little jarring but refers to the “success” of the genetic testing program in Saudi Arabia

Back here in the U.S., the Genetic Information Nondiscrimination Act of 2008 (GINA) expressly prohibits employment and other types of discrimination based on genetic information, but there’s a sizable list of things that GINA won’t protect against.

[LinksEtc]

Tweeted by @CMichaelGibson


"Amgen Requires Patients in Repatha Copay Program To Surrender"
http://cardiobrief.org/2015/10/22/amgen-requires-patients-in-repatha-copay-program-to-surrender-their-privacy/

Amgen’s policy seems to me to be an extraordinary overreach. My concern is that most patients won’t read the small print, and sign to get the discount on their medication without realizing all their rights to privacy they are giving away.

I am surprised that consumer protection agencies, patient advocates, ethicists and the government aren’t all over this.

[ninjaroll]

Because so many love Fitbit and personal health trackers.

Fitbit and other technology may expose you

The latest iOS update does allow the health tracker to be disabled but the default setting is enabled.  FYI, for those of us with iPhones with or without Apple watch.

Data from wearable devices is being eyed as evidence in the courtroom

On an individual level, that information could suggest that you take the stairs instead of the elevator. But on the aggregate level, it is a treasure trove of information, says San Jose, California, lawyer Neda Shakoori, who oversees the e-discovery practice at McManis Faulkner.