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Thinking ‘oat’ of the box: Technology to resolve the ‘Goldilocks Data Dilemma’

Marielle Gross
Robert Miller

By ROBERT C. MILLER, JR. and MARIELLE S. GROSS, MD, MBE

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.

The problem with porridge

Today, we regularly hear stories of research teams using artificial intelligence to detect and diagnose diseases earlier with more accuracy and speed than a human would have ever dreamed of. Increasingly, we are called to contribute to these efforts by sharing our data with the teams crafting these algorithms, sometimes by healthcare organizations relying on altruistic motivations. A crop of startups have even appeared to let you monetize your data to that end. But given the sensitivity of your health data, you might be skeptical of this—doubly so when you take into account tech’s privacy track record. We have begun to recognize the flaws in our current privacy-protecting paradigm which relies on thin notions of “notice and consent” that inappropriately places the responsibility data stewardship on individuals who remain extremely limited in their ability to exercise meaningful control over their own data.

Emblematic of a broader trend, the “Health Data Goldilocks Dilemma” series calls attention to the tension and necessary tradeoffs between privacy and the goals of our modern healthcare technology systems. Not sharing our data at all would be “too cold,” but sharing freely would be “too hot.” We have been looking for policies “just right” to strike the balance between protecting individuals’ rights and interests while making it easier to learn from data to advance the rights and interests of society at large. 

What if there was a way for you to allow others to learn from your data without compromising your privacy?

To date, a major strategy for striking this balance has involved the practice of sharing and learning from deidentified data—by virtue of the belief that individuals’ only risks from sharing their data are a direct consequence of that data’s ability to identify them. However, artificial intelligence is rendering genuine deidentification obsolete, and we are increasingly recognizing a problematic lack of accountability to individuals whose deidentified data is being used for learning across various academic and commercial settings. In its present form, deidentification is little more than a sleight of hand to make us feel more comfortable about the unrestricted use of our data without truly protecting our interests. More of a wolf in sheep’s clothing, deidentification is not solving the Goldilocks dilemma.

Tech to the rescue!

Fortunately, there are a handful of exciting new technologies that may let us escape the Goldilocks Dilemma entirely by enabling us to gain the benefits of our collective data without giving up our privacy. This sounds too good to be true, so let me explain the three most revolutionary ones: zero knowledge proofs, federated learning, and blockchain technology.

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Health in 2 Point 00, Episode 93 | Ginger, VillageMD, & Health Recovery Solutions

The drought is over! On Episode 93 of Health in 2 Point 00, Jess and I talk deals, deals, deals. Ginger, which provides digital mental health services, raises $35 million and is growing quite fast; VillageMD, one of numerous companies who are trying to figure out a new way to do primary care, raises $100 million; Health Recovery Solutions, which does remote patient monitoring, gets $10 million. In other news, Livongo’s stock price collapsed a little bit, but it was crazy when it first came out so now prices are more “normal”; uBiome files for bankruptcy, and Tula Health’s $2.5 million raise gets quite possibly the best press release we’ve ever seen (you’ve got to hear this). —Matthew Holt

Radiology Firing Line | Choosing Wisely, Wisely

By SAURABH JHA, MD

How easy is it for physicians to choose wisely and reject low value care? Who decides what’s wise and what’s unwise? In this episode Saurabh Jha (aka @RogueRad) speaks with William Sullivan MD JD. Dr. Sullivan is an emergency physician and an attorney specializing in healthcare issues. Dr. Sullivan represents physicians and has published many articles on legal aspects of medicine. He is a past president of the Illinois College of Emergency Physicians and a past chair and current member of the American College of Emergency Physicians’ Medical Legal Committee.

Listen to our conversation here.

Saurabh Jha is a contributing editor to THCB and host of Radiology Firing Line Podcast of the Journal of American College of Radiology, sponsored by Healthcare Administrative Partner

WW (aka WeightWatchers) Is Watching Health Tech & Behavior Change Thinking | Zoe Griffiths, WW

By JESSICA DaMASSA, WTF HEALTH

What’s WeightWatchers, now WW, doing at a health tech conference? Zoe Griffiths, Global Director of Nutrition, talks about what’s next for the company’s 4.5M members worldwide as their “wellness partner” embraces the latest trends and thinking that help make the behavior changes that lead to weight loss easier and more sticky. With the obesity epidemic in full swing, weight management stands on that increasingly blurry line between ‘wellness’ and ‘healthcare.’ How will WW continue to help its members see results?

Filmed at HIMSS/Health 2.0 Europe in Helsinki, Finland in June 2019.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew Holt.

Get 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

Barbarians at the Gate

By ADRIAN GROPPER, MD

US healthcare is exceptional among rich economies. Exceptional in cost. Exceptional in disparities. Exceptional in the political power hospitals and other incumbents have amassed over decades of runaway healthcare exceptionalism. 

The latest front in healthcare exceptionalism is over who profits from patient records. Parallel articles in the NYTimes and THCB frame the issue as “barbarians at the gate” when the real issue is an obsolete health IT infrastructure and how ill-suited it is for the coming age of BigData and machine learning. Just check out the breathless announcement of “frictionless exchange” by Microsoft, AWS, Google, IBM, Salesforce and Oracle. Facebook already offers frictionless exchange. Frictionless exchange has come to mean that one data broker, like Facebook, adds value by aggregating personal data from many sources and then uses machine learning to find a customer, like Cambridge Analytica, that will use the predictive model to manipulate your behavior. How will the six data brokers in the announcement be different from Facebook?

The NYTimes article and the THCB post imply that we will know the barbarians when we see them and then rush to talk about the solutions. Aside from calls for new laws in Washington (weaken behavioral health privacy protections, preempt state privacy laws, reduce surprise medical bills, allow a national patient ID, treat data brokers as HIPAA covered entities, and maybe more) our leaders have to work with regulations (OCR, information blocking, etc…), standards (FHIR, OAuth, UMA), and best practices (Argonaut, SMART, CARIN Alliance, Patient Privacy Rights, etc…). I’m not going to discuss new laws in this post and will focus on practices under existing law.

Patient-directed access to health data is the future. This was made clear at the recent ONC Interoperability Forum as opened by Don Rucker and closed with a panel about the future. CARIN Alliance and Patient Privacy Rights are working to define patient-directed access in what might or might not be different ways. CARIN and PPR have no obvious differences when it comes to the data models and semantics associated with a patient-directed interface (API). PPR appreciates HL7 and CARIN efforts on the data models and semantics for both clinics and payers.

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Providers Don’t Take Enough Risk to Bend the Cost Curve

By KEN TERRY

Back in 2015, 20 major health systems and payers pledged to convert 75% of their business to value-based arrangements by 2020. Today, more than two-thirds of payments from U.S. commercial health insurers are tied to some kind of value-based model. By 2021, the health plans expect three-quarters of their payments will be value-based.

However, a recent analysis of Change Healthcare data by Modern Healthcare found that the percentage of value-based revenue tied up in upside/downside risk contracts was in the single digits. Among the types of two-sided risk contracts that provider organizations had were capitation or global payment (7.3%), pay for performance (6.5%), prospective bundled payment (5%), population-based payment (5.8%), and retrospective bundled payment (4.1%).

An AMGA survey picked up signs of a recession in risk contracting in 2016. A year earlier, survey respondents—mostly large groups–had predicted their organizations would get 9 percent of revenue from capitated products. In 2016, the actual figure was 5 percent, according to a Health Affairs post by the AMGA’s Chet Speed and the late Donald Fisher.

The authors cited a number of obstacles to the spread of risk contracting, including “limited commercial value-based or risk-based products in their local markets; the inability to access administrative claims data from all payers; the massive administrative burden of submitting data in different formats to different payers; lack of access to investment capital; and inadequate infrastructure.”

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Abu Dhabi’s Looking to Invest in the Future of Health | Abdulla Alii & Dirk Richter, Dept of Health

By JESSICA DaMASSA, WTF HEALTH

Abu Dhabi is looking to diversify its economy and has its sights set on the burgeoning health tech industry. Abdulla Alii & Dirk Richter from the Abu Dhabi Department of Health talk to Jessica DaMassa at Webit in Sofia, Bulgaria where the two are scouting start-ups and established healthcare partners who are interested in helping build a health innovation ecosystem that will augment their country’s traditional oil business.

Filmed in May 2019 at Webit in Sofia, Bulgaria.

Patient Controlled Health Data: Balancing Regulated Protections with Patient Autonomy

By KENNETH D. MANDL, MD, MPH, DAN GOTTLIEB, MPA, and JOSHUA MANDEL, 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.

A patient can, under the Health Insurance Portability and Accountability Act (HIPAA), request a copy of her medical records in a “form and format” of her choice “if it is readily producible.” However, patient advocates have long complained about a process which is onerous, inefficient, at times expensive, and almost always on paper. The patient-driven healthcare movement advocates for turnkey electronic provisioning of medical record data to improve care and accelerate cures.

There is recent progress. The 21st Century Cures Act requires that certified health information technology provide access to all data elements of a patient’s record, via published digital connection points, known as application programming interfaces (APIs), that enable healthcare information “to be accessed, exchanged, and used without special effort.”  The Office of the National Coordinator of Health Information Technology (ONC) has proposed a rule that will facilitate a standard way for any patient to connect an app of her choice to her provider’s electronic health record (EHR).  With these easily added or deleted (“substitutable”) apps, she should be able to obtain a copy of her data, share it with health care providers and apps that help her make decisions and navigate her care journeys, or contribute data to research. Because the rule mandates the ”SMART on FHIR” API (an open standard for launching apps now part of the Fast Healthcare Interoperability Resources ANSI Standard), these apps will run anywhere in the health system.

Apple recently advanced an apps-based information economy, by connecting its native “Health app” via SMART on FHIR, to hundreds of health systems, so patients can download copies of their data to their iPhones. The impending rule will no doubt spark the development of a substantial number of additional apps.

Policymakers are grappling with concerns that data crossing the API and leaving a HIPAA covered entity are no longer governed by HIPAA. Instead, consumer apps and the data therein fall under oversight of the Federal Trade Commission (FTC). When a patient obtains her data via an app, she will likely have agreed to the terms and the privacy policy for that app, or at least clicked through an agreement no matter how lengthy or opaque the language.  For commercial apps in particular, these are often poorly protective. As with consumer behavior in the non-healthcare apps and services marketplace, we expect that many patients will broadly share their data with apps, unwittingly giving up control over the uses of those data by third parties.

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Everybody Seems to be an Expert, Except Your Family Doctor?

By HANS DUVEFELT, MD

It’s a funny world we live in. Lots of people make a handsome living, defining their work and setting their own fees and hours with little or no formal education or certification

There are personal and executive coaches, wealth advisers, marketing experts, closet organizers and all kinds of people offering to help us run our lives.

In each of these fields, the expectation is that the provider of such services has his or her own “take” or perspective and offers advice that is individual, unique and as far removed from cookie cutter dogma as possible. Why pay for something generic that lots of people offer everywhere you turn?

So why is it, in this day of paying lip service to “personalized medicine”, genetic mapping, the human biome and psychoneuroimmunology that we expect our healthcare to be standardized and utterly predictable?

And why is it that we are so willing to fragment our care, using convenient care clinics, health apps, specialists who don’t communicate with each other and so on? Does anybody believe it makes sense to have your life coach tell you to have a latte if you feel like it because it makes you happy and your financial adviser scorn you for wasting money, never mind your health coach talking about all those unnecessary calories?

In today’s world, almost all knowledge and information is available, for free, instantly and from anywhere on the planet. But this has not eliminated our need for “experts”. It used to be that we paid experts for knowing the facts, but now we pay them for sorting and making sense of them, because there are too many facts and too much data out there to make anything self explanatory.

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Three Reasons Why 4 of 5 Digital Health Solutions Don’t Make It | Bram Van Leeuwen, Sanofi

By JESSICA DaMASSA, WTF HEALTH

4 of 5 digital health solutions won’t make it to the doctor’s office, and Bram Van Leeuwen, Sanofi’s Lead for Digital Innovation BeNeLux, thinks he knows why. Health tech startups (and their health system advocates) should tune in to find out how they can up their odds of getting their tech integrated into existing points of care. Are there any health systems in the world that have excelled at implementing health tech solutions? Bram’s picked some winners and is sharing best practices.

Filmed at HIMSS/Health 2.0 Europe in Helsinki, Finland in June 2019.

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