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For Your Radar — Huge Implications for Healthcare in Pending Privacy Legislation

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Deven McGraw
Vince Kuraitis

By VINCE KURAITIS and DEVEN McGRAW

Two years ago we wouldn’t have believed it — the U.S. Congress is considering broad privacy and data protection legislation in 2019. There is some bipartisan support and a strong possibility that legislation will be passed. Two recent articles in The Washington Post and AP News will help you get up to speed.

Federal privacy legislation would have a huge impact on all healthcare stakeholders, including patients.  Here’s an overview of the ground we’ll cover in this post:

  • Why Now?
  • Six Key Issues for Healthcare
  • What’s Next?

We are aware of at least 5 proposed Congressional bills and 16 Privacy Frameworks/Principles. These are listed in the Appendix below; please feel free to update these lists in your comments.  In this post we’ll focus on providing background and describing issues. In a future post we will compare and contrast specific legislative proposals.

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Health in 2 point 00, Episode 15

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Jessica DaMassa asks me every question about health & technology she can fit into 2 minutes. Topics include Facebook looking for hospital data, the EU starting a VC fund, JP Morgan CEO Jamie Dimon blowing up the hype about ABC & the ACA under more assault. Jessica called this a “painful episode” but I thought it was rather good! BTW THCB will be featuring Jessica’s new video series WTF Health very soon so get prepped!–Matthew Holt

The Best Positioned Tech Giant in Healthcare Today? The Answer May Surprise You.

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By DAVID SHAYWITZ, MD

When you think about tech giants playing in healthcare, you think of Google and the work Verily is doing; you think of Apple and their HealthKit and ResearchKit applications, as well as their rumored plans to organize all your medical data on your iPhone; you may even think of Amazon and their potential entry into the pharmacy market.

But the name you may hear about least–Facebook–may actually be the company influencing healthcare the most, and may also be the best positioned to support the patient-centered future that so many imagine and that Eric Topol described in The Patient Will See You Now (my Wall Street Journal review here).

At first blush, Facebook seems to be doing remarkably little in health; their most notable effort has arguably been providing the opportunity to list your organ donor status, an initiative which produced an immediate lift in organ donor registrations.

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The Facebook Model for Socialized Health Care

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By EDGAR T. WILSON

Screen Shot 2015-02-26 at 5.06.17 PMAs government involvement in U.S. health care deepens—through the Affordable Care Act, Meaningful Use, and the continued revisions and expansions of Medicaid and Medicare—the politically electric watchword is “socialism.”

Online, of course, social media is not a latent communist threat, but rather the most popular destination for internet users around the world.

People, whether out of fear for being left behind, or simply tickled by the ease with which they can publicize their lives, have been sharing every element of their public (and very often, their private) lives with ever-increasing zeal. Pictures, videos, by-the-minute commentary and updates, idle musings, blogs—the means by which people broadcast themselves are as numerous and diverse as sites on the web itself.

Even as the public decries government spying programs and panics at the news of the latest massive data-breach, the daily traffic to sites like Facebook and Twitter—especially through mobile devices—not only stays high, but continues to grow. These sites are designed around users volunteering personal information, from work and education information, to preferences in music, movies, politics, and even romantic partners.

So why not health data?

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#Whitecoats4Blacklives

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By ADERINOLA A. ADEJARE

Screen Shot 2014-12-11 at 1.27.35 PMAt 3PM EST on December 10, 2014, medical and dental students at over 70 schools participated in the “National White Coat Die-In.” The event was organized on Facebook and spearheaded by students at University of California, San Francisco (UCSF) School of Medicine who described the event as “a demonstration in response to the events in Ferguson and New York because #BlackLivesMatter.”

Across the country, there have been numerous protests against the grand jury’s decision in Fergurson, Mo. not to indict officer Darren Wilson who shot and killed Michael Brown, an unarmed teenage boy. Similarly, in Staten island, NY, the grand jury decided not to indict officer Daniel Pantaleo who killed Eric Garner, an unarmed black man, using a banned chokehold.

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Facebook Is Bad For You. And Giving Up Using It Will Make You Happier

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By Akshat Rathi

Giant Zuckerbergs
In the past few years, the fortunate among us have recognised the hazards of living with an overabundance of food (obesity, diabetes) and have started to change our diets. But most of us do not yet understand that Facebook is to the mind what sugar is to the body. Facebook feed is easy to digest. It has made it easy to consume small bites of trivial matter, tidbits that don’t really concern our lives and don’t require thinking. That’s why we experience almost no saturation. Unlike reading books and long magazine articles (which require thinking), we can swallow limitless quantities of photos and status updates, which are bright-coloured candies for the mind. Sadly, we are still far away from beginning to recognise how toxic Facebook can be.

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Actually, We’d Probably All Be Better Off With Our Health Records on Facebook

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By Melissa McCormack

A Facebook user’s timeline provides both a snapshot of who that user is and a historical record of the user’s activity on Facebook. My Facebook timeline is about me, and fittingly, I control it. It’s also one, single profile. Anyone I allow to view my timeline views my timeline—they don’t each create their own copies of it.

Intuitive, right? So why don’t medical records work that way? There is no unified, single patient record—every doctor I’ve ever visited has his or her own separate copy of my records. And in an age where we can conduct banking transactions on my smartphone, many patients still can’t access or contribute to the medical records their doctors keep for them.

My proposal? Medical records should follow Facebook’s lead.

Cross-industry innovation isn’t new. BMW borrowed from the tech world to create its iDrive; Fischer Sports reduced the oscillation of its skis by using a technologycreated for stringed instruments. So I asked myself: Who has mastered the user-centric storing and sharing platform? The more I thought about it, the more I decided a Facebook timeline approach could be just what medical records need.
To see what I mean, let’s explore some of Facebook timeline’s key features to see how each could map to features of the ideal medical record.

“About” for Complete, Patient-Informed Medical History

On Facebook: The “about” section is the one that most closely resembles the concept of a user profile. It includes a picture selected by the user and lists information such as gender; relationship status; age, political and religious views; interests and hobbies; favorite quotes, books and movies; and free-form biographical information added by the user.

In medical records: The “about” section would be a snapshot of the patient’s health and background. It should include the patient’s age, gender, smoking status, height, weight, address, phone number, and emergency contact information; the patient’s primary care provider; and insurance information. This section would include a summary list of the patient’s current diagnoses and medications, as well as family history. And importantly, both the doctor and the patient would be able to add details.

FACEBK about-patient

“Privacy Settings” and “Permissions” for Controlled Sharing

On Facebook: Privacy settings allow users to control who can see the information they post or that is posted about them. For example, in my general privacy settings I can choose to make my photos visible only to the people I’ve accepted as “friends.” However, if I post a photo I want the entire world to see, I can change the default setting for that photo to be visible publicly instead.

Facebook also allows users to grant “permissions” for outside applications to access their profiles. For example, let’s say I use TripAdvisor to read travel reviews. TripAdvisor lets me sign in to its site using my Facebook account, rather than creating a separate TripAdvisor account. But, to do this I must grant TripAdvisor “permission” to access my Facebook account.

In medical records: Patients could use “privacy settings” to control whether all or part of their information can be seen by a family member or caregiver. For
example, if my aging mother wanted to give me access to her “events” (upcoming doctor’s appointments), she could do so. If my college-aged son who is still on my health plan wanted to give me access to his knee X-rays, he could.

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Can Social Media Really Influence Health Behaviors? A Small Clinical Trial Argues The Answer Is Yes.

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By Jaan Sidorov, MD

Thanks to the technologic allure of iPhones replacing stethoscopes, apps substituting for doctors and electronic information substituting for having to actually talk to patients, this thoroughly modern correspondent is all about medical-social media.

Think Facebook for the flu.  Twitter for tinnitus. Egads, listen to the typical consultant, pundit or futurist and it’s easy to believe that we’re on the verge of a silicon-based health care revolution.

But then reality intrudes and some skeptic somewhere always asks about the bang for the buck, the juice for the squeeze, the return for the investment. It’s a good question.

For something of an answer, consider the results appearing in a recently published randomized clinical trial by researchers at UCLA. Over a 4 month period, “at risk persons” were recruited for a clinical research trial with on-line ads (Facebook banners, Craigslist, for example) as well as announcements in community settings and venues.  Once subjects met the inclusion criteria and had a unique Facebook account, they were randomly assigned to one of two treatment arms.

One treatment arm used a closed Facebook group to coach persons about their at risk condition.  The other treatment arm similarly used Facebook to coach persons about general health improvement.  Lay “Peer Leaders,” who were given a three hour training session on “epidemiology of the condition or general health subjects and ways of using Facebook to discuss health and stigmatizing topics,” were assigned to lead the groups.

Peer Leaders attempted to reach out to their assigned group persons with messaging, chats and wall posts.  Once the link was established, the relationship in the intervention group included communication about prevention and treatment of the condition. At the end of 1, 2 and three months of the study, participants completed a variety of surveys.

Results?

57 individuals were in the control general health group and 55 were in the condition coaching group.  According to the surveys, intervention patients were ultimately statistically significantly more likely to agree to condition testing (44%) than the control patients (20%).  Because there were few participants, the modest decrease in actual tests or risk behaviors were not statistically meaningful.

This correspondent’s take:

While this was a small study, this is the first time that I have seen reasonable proof that social media by itself can move the behavior needle.  On the other hand, this did not result in a patient engagement stampede toward better care or hard clinical outcomes.  A majority of participants (56%) did not appear to benefit.  Nonetheless, the results do support the inclusion of Facebook-style closed group social media in the suite of population health management services.

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Twitter Study of Vaccine Messages: Opinions Are Contagious, But In Unexpected Ways

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By Beth Skwarecki

Remember 2009? The H1N1 pandemic we were all waiting for? I do. I was pregnant; H1N1 was particularly risky for pregnant women. The vaccine wasn’t available until after I had my baby, but when they held a clinic an hour north of where I live, I brought my husband there so we could both get our shots. My infant son was too young to be vaccinated, so I wanted to protect him through herd immunity.

A study came out recently on twitter messages from that time. How did pro-vaccine sentiments spread, versus anti-vaccine ones? Which messages were more contagious?

I talked to one of the authors, Marcel Salathe, today. He’s an infectious disease researcher studying the spread and transmission, not (just) of disease, but of information. “We assume people infect each other with opinions about vaccinations,” he said, and the H1N1 scare was a good opportunity to put some of his group’s theories to the test.

They collected nearly half a million tweets about the H1N1 flu vaccine. In 2009, H1N1 wasn’t included in the regular flu shot, and became available partway through flu season as a separate dose. With a possible pandemic looming, people had plenty of motivation to get the vaccine and encourage others to get it—butanti-vaccine sentiments were in circulation too.

The result, striking but perhaps not surprising: negative opinions were more contagious than positive ones. (Specifically, someone who read a lot of anti-vaccine messages was more likely to follow up by tweeting or retweeting negative messages of their own.)

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Can Facebook Save Us?

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By JAMES SALWITZ, MD


At some point, this gets to be ridiculous. Online, I can buy any item from anywhere at any price, pay any bill, watch any movie, listen to any song, order dinner, schedule car repair or read about any subject on Wikipedia.  I can determine the weather in Rio, sport scores of Barcelona, Parisian traffic or by GPS the location of my kids, just down the block.  However, I absolutely cannot learn anything at all of the health history of the flesh and blood cancer patient sitting right in front of me.

Today, I am seeing long-term patient, Thomas R.  Father of three and a really nice guy, Tom is a medical challenge.

He is immunocompromised and status post 20 years of complex chemotherapy, radiotherapy, a bone marrow transplant and several bizarre complications, we barely understand.  In the last two months, since his last visit with me, he has seen an internist, a dermatologist, a podiatrist, a neurologist, a dentist and an infectious disease specialist.  These doctors ordered X-rays, lab tests, blood cultures, an EMG, a skin biopsy and several new medicines.

These are confusing tests resulting in confusing diagnoses with confusing therapy in a confusing patient.

What records do I have of all this new complexity? Nada. None.  Moreover, based on our files, all these other physicians have none of ours.

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