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Tag: Health Data

Health Data Outside HIPAA: Simply Extending HIPAA Would Be a #FAIL

Vince Kuraitis
Deven McGraw

By DEVEN McGRAW and VINCE KURAITIS

This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.

Early in 2019 the Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare and Medicaid Services (CMS) proposed rules intended to achieve “interoperability” of health information.

Among other things, these proposed rules would put more data in the hands of patients – in most cases, acting through apps or other online platforms or services the patients hire to collect and manage data on their behalf. Apps engaged by patients are not likely covered by federal privacy and security protections under the Health Insurance Portability and Accountability Act (HIPAA) — consequently, some have called on policymakers to extend HIPAA to cover these apps, a step that would require action from Congress.

In this post we point out why extending HIPAA is not a viable solution and would potentially undermine the purpose of enhancing patients’ ability to access their data more seamlessly:  to give them agency over health information, thereby empowering them to use it and share it to meet their needs.

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Healthcare Might Look Good in Plaid

By KIM BELLARD

I don’t really follow FinTech — I can’t even keep up with HealthTech! — but it caught my eye when Visa announced that it was acquiring FinTech company Plaid for $5.3b; a 2018 funding round valued the company at $2.65b.  A 100% increase in valuation within a year suggests that something important is going on, or at least that people think something is.  

I suspect there may be some lessons for healthcare in there somewhere.  

For those of you who are equally as unfamiliar with FinTech’s terrain, Plaid has been described as the “plumbing” that supports many other FinTech companies.  Launched in 2013, one in four people with a U.S. bank account are now believed to use Plaid to connect with 2,600 FinTech developers connected to more than 11,000 financial institutions.  Its customers include Acorns, Betterment, Chime, Coinbase, Gemini, Robinhood, Transferwise, and Venmo.  Plaid claims it connects with 200 million consumer accounts. 

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For all who hate computers in medicine: here’s what we got before.

By e-Patient Dave DeBronkart

The photo below shows what “visit notes” from a doctor appointment might look like in the era before computers. Just two days before my first speech where I said “Gimme my damn data,” I had an ENT visit, and on the way out I asked for a copy of the doctor’s notes. The clerk snickered out loud and showed it to me, saying, “If you really want it….”

No joke; this is what the doctor had recorded.

Visit notes from my ENT appointment, Sept 15, 2009
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Disrupting Medicare Advantage for Data Access, Better Outcomes | Vivek Garipalli, CEO Clover Health

BY JESSICA DAMASSA, WTF HEALTH

Vivek Garipalli, CEO and Co-Founder of Clover Health initially set out trying to create a high-tech healthcare company aimed at improving clinical decision making, while leveraging the best of tech and data science in the process. Sounds about right for a guy who previously founded a health system (CarePoint Health), so…how did he end up with a high-tech Medicare Advantage plan instead? Isn’t clinical disruption hard enough? In this very candid chat about the larger issues thwarting tech and the healthcare business model, Vivek explains how he HAD to turn Clover into a health plan in order to get “reliable access” to the longitudinal set of information that would truly help patients and providers achieve better health outcomes. Can this kind of thinking ever be applied to the under 65 market? How does Clover perpetuate this model? Founded in 2012, this late-stage startup has big plans for scaling up and they’re centered on winning over physicians.

Filmed at the HIMSS Health 2.0 Conference in Santa Clara, CA in September 2019.

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The Intrusion of Big Tech into Healthcare Threatens Patients’ Rights

By ANDREW DORSCH, MD

The question of how much time I spend in front of the screen has pestered me professionally and personally. 

A recent topic of conversation among parents at my children’s preschool has been how much screen time my toddlers’ brain can handle. It was spurred on by a study in JAMA Pediatrics that evaluated the association between screen time and brain structure in toddlers. The study reported that those children who spent more time with electronic devices had lower measures of organization in brain pathways involved in language and reading. 

As a neurologist, these findings worry me, for my children and for myself. I wonder if I’m changing the structure of my brain for the worse as a result of prolonged time spent in front of a computer completing medical documentation. I think that, without the move to electronic medical records, I might be in better stead — in more ways than one. Not only is using them potentially affecting my brain, they pose a danger to my patients, too, in that they threaten their privacy. 

As any practicing physician can tell you, electronic medical records represent a Pyrrhic victory of sorts. They present a tangible benefit in that medical documentation is now legible and information from different institutions can be obtained with the click of a button — compared to the method of decades past, in which a doctor hand-wrote notes in a paper chart — but there’s also a downside. 

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Angels are Taking our Data

By ePatient Dave deBronkart

A response to Michael Millenson’s holiday song

Angels seeking Clouds to buy
But healthcare’s not like Spotify
My health data’s here and yon
Monetized by Amazon

Gloria, in excessive profits
Gloria, it’s excessive net cash flow

Investors, why this jubilee?
You’ve done naught to soothe our pain
No care’s improved nor costs controlled
My data just fuels cap’tal gains

Gloria, in excessive profits
Gloria, it’s excessive net cash flow

Silicon Valley come and see
Start-up births thy VCs sing
Come invest on bended knee
But health care’s not yet transforming

Gloria, such excessive profits
Gloria, just excessive net cash flow

Angels Have Our Health Data

A holiday song from @MLMillenson, December 2019

Angels we’ve heard from the Cloud on high
Or maybe it was Spotify.

Our health data’s floating hither and yon
Monetized by Google and Amazon.

Gloria, in excessive profits
Gloria, in excessive profits                                                                      

Investors, why this jubilee?
’cause you’ve made us healthy and absent pain?
Is care improved and costs controlled?
Or our data just fuels your capital gains?

Gloria, in excessive profits
Gloria, in excessive profits

Come to Silicon Valley and see
Start-ups whose birth the VC’s sing.
Come adore on bended knee
Promises of health care transforming.

Gloria, in excessive profits
Gloria, in excessive profits

Patient-Directed Uses vs. The Platform

By ADRIAN GROPPER, MD

This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.

It’s 2023. Alice, a patient at Ascension Seton Medical Center Austin, decides to get a second opinion at Mayo Clinic. She’s heard great things about Mayo’s collaboration with Google that everyone calls “The Platform”. Alice is worried, and hoping Mayo’s version of Dr. Google says something more than Ascension’s version of Dr. Google. Is her Ascension doctor also using The Platform?

Alice makes an appointment in the breast cancer practice using the Mayo patient portal. Mayo asks permission to access her health records. Alice is offered two choices, one uses HIPAA without her consent and the other is under her control. Her choice is:

  • Enter her demographics and insurance info and have The Platform use HIPAA surveillance to gather her records wherever Mayo can find them, or
  • Alice copies her Mayo Clinic ID and enters it into the patient portal of any hospital, lab, or payer to request her records be sent directly to Mayo.

Alice feels vulnerable. What other information will The Platform gather using their HIPAA surveillance power? She recalls a 2020 law that expanded HIPAA to allow access to her behavioral health records at Austin Rehab.

Alice prefers to avoid HIPAA surprises and picks the patient-directed choice. She enters her Mayo Clinic ID into Ascension’s patient portal. Unfortunately, Ascension is using the CARIN Alliance code of conduct and best practices. Ascension tells Alice that they will not honor her request to send records directly to Mayo. Ascension tells Alice that she must use the Apple Health platform or some other intermediary app to get her records if she wants control.  

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The Definition of Health Data has Changed—and HHS is All Over It | Dr. Mona Siddiqui, HHS

By JESSICA DAMASSA, WTF HEALTH

Dr. Mona Siddiqui, Chief Data Officer at the US Department of Health & Human Services (HHS), says the definition of health data has changed. Health data is not just about what kind of data or where it came from, but, now, she says health data is more or less data that is defined by its intent. (Think how social media data is being used in healthcare these days for just a minute here..) Mona led a meeting with over 70 stakeholders across the healthcare industry this summer to talk next steps for this new era of health data: assessing risks and benefits, talking transparency, and looking at issuing recommendations for actions that HHS can be engaged in. What’s next as the industry continues to look to HHS for guidance around data policy? Tune in to find out.

Filmed at the HIMSS Health 2.0 Conference in Santa Clara, CA in September 2019.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew HoltGet a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.

Concrete Problems: Experts Caution on Construction of Digital Health Superhighway

By MICHAEL MILLENSON

If you’re used to health tech meetings filled with go-go entrepreneurs and the investors who love them, a conference of academic technology experts can be jarring.

Speakers repeatedly pointed to portions of the digital health superhighway that sorely need more concrete – in this case, concrete knowledge. One researcher even used the word “humility.”

The gathering was the annual symposium of the American Medical Informatics Association (AMIA). AMIA’s founders were pioneers. Witness the physician featured in a Wall Street Journal story detailing his use of “advanced machines [in] helping diagnose illness” – way back in 1959.

That history should provide a sobering perspective on the distinction between inevitable and imminent (a difference at least as important to investors as intellectuals), even on hot-button topics such as new data uses involving the electronic health record (EHR). 

I’ve been one of the optimists. Earlier this year, my colleague Adrian Gropper and I wrote about pending federal regulations requiring providers to give patients access to their medical record in a format usable by mobile apps. This, we said, could “decisively disrupt medicine’s clinical and economic power structure.”

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