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Our Cancer Support Group On Facebook Is Trapped

Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups

By ANDREA DOWNING

Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.

As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.

This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.

Facebook recently had a summit to share that groups are at the heart of their future. We had a summit of our own with some of the amazing leaders within the broader cancer community on social media.

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Health in 2 Point 00, Episode 76 | Facebook releasing an EMR? Jim Cramer Going to Epic? #AprilFools

Facebook is releasing an EMR? Jim Cramer is going to work at Epic? April Fools! On today’s actual Health in 2 Point 00 Episode 76, Jess asks me about the follow up from Health Datapalooza, which ended with the government saying they will be changing the world and that everyone should join them in their initiative to innovate digital health. AHRQ & CMMI ran digital health challenges, and CMMI will be doing an AI challenge for $1 million for startups in the space. Speaking of the government, Seema Verma was in the news for her PR spending and as I said “Evil Twin Seema” and “Good Seema” are joined at the hip and they should “not screw around on the PR front”. In other news, MountSinai launched a digital health institute to develop advances in artificial intelligence and other emerging health care technologies spaces. Clover Health laid off a ton of people, and according to me, they are starting to get serious because running a Medicare Advantage plan is hard work — Matthew Holt

SCOOP: Facebook enters EMR business

by MATTHEW HOLT

Big news out of Mountain View, California today as Facebook COO Sheryl Sandberg announced that the social networking giant was going to formally enter the EMR business. Sandberg explained that Facebook already has all Americans and most of the world’s population on its system and that adding a little bit of information about their health would be trivial given that it’s easy with AR to abstract that information from their profiles, not to mention that everyone’s phone is already sending data back to Facebook.

In particular, Sandberg highlighted the fact that Facebook has already captured almost all the personal health information of many people with cancer and plenty of other rare diseases in the thousands of health communities that it has been pushing hard over the past few years. Not only have those individuals not known what Facebook is allowing third parties to do with that data, or which hackers have already stolen it in a SICGRL hack, but they have also found it impossible to extract themselves or their data from those groups. As Sandberg says “We already have the EMR business model down, now we just have to provide the products”

When it was pointed out to Sandberg that Facebook didn’t actually have any professional EMR tools that could be used by clinicians or doctors, a scruffily dressed guy hiding his bad haircut under a hoodie grabbed the mike and shouted “We’ve seen the schlock that Epic, Cerner and the rest put out–my wife has to use it and she spends every evening catching up on her data entry. Shouldn’t be too hard for our engineers to knock that off–just ask those guys at Snapchat.” Sandberg commented that while EMR vendors move slowly and break things, Facebook has shown over the years that it can do that much faster. “Have you seen what we did to American democracy or the EU?”

Later today Cerner stock was trading off 25%. When asked, an Epic spokesperson commented that even if you added their ages together, Sandberg and Zuckerberg were far too young to run a proper EMR company.

Matthew Holt is the Publisher of THCB

Health in 2 Point 00, Episode 75 | Rounds & IPOs, Health Datapalooza, & the Facebook Controversy

Today on Health in 2 Point 00, Jess and I are at 10th annual Health Datapalooza in Washington D.C.! Jess talks to me about Xealth’s $11 million round to develop out its company, and Change Healthcare is applying for a $100 million IPO. The big takeaways from Health Datapalooza are that many people and companies have integrated data into their systems, but they haven’t been able to gain many actionable insights from it. Also, if you haven’t heard of the complaint Andrea Downing, Fred Trotter, and David Harlow wrote to the FTC concerning the privacy and data that can be downloaded from Facebook’s groups, you better check it out. It details out the concern that Facebook is not protecting the data of patients as anyone can download sensitive data from the groups and use it — Matthew Holt

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

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

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.

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

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

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

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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