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Remembering the Real Stakeholders: Patient Privacy Rights Comments to TEFCA Draft 2

Deborah C. Peel
Adrian Gropper

By ADRIAN GROPPER, MD and DEBORAH C. PEEL, MD

TEFCA will succeed where previous national health information exchange efforts have failed only if it puts patients’ and families’, and/or their fiduciary agents, in control of health technology. This is the only path to restore trust in physicians, and to ensure accurate and complete data for treatment and research.

As physicians and patient advocates, we seek a longitudinal health record, patient-centered in the sense of being independent of any particular institution. An independent health record is also essential to enhancing competition and innovation for health services. TEFCA Draft 2 is the latest in a decade of starts down the path to an independent longitudinal health record, but it still fails to deal with the problems of consent, patient matching, and regulatory capture essential for a national-scale network. Our comments on regulatory capture will be filed separately.

We strongly support the importance in Draft 2 of Open APIs, Push, and a relationship locator service. We also strongly support expanding the scope to a wider range of data sources, beyond just HIPAA covered entities in order to better serve the real-world needs of patients and families.

However, Draft 2 still includes design practices such as the lack of patient transparency, lack of informed consent, and a core design based on involuntary surveillance. This institution-centered design barely works at a community level and leaves out many key real-world participants. It is wishful thinking to believe that it will work with expanded participant scope and on a national scale.

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Today’s Doctors: Colleagues or Free Agents?

By HANS DUVEFELT, MD

My first job after residency was in a small mill town in central Maine. I joined two fifty something family doctors, one of whom was the son of the former town doctor. I felt like I was Dr. Kiley on “Marcus Welby, MD.” I didn’t have a motorcycle, but I did have a snazzy SAAB 900.

Will was a John Deere man, wore a flannel shirt and listened to A Prairie Home Companion. He was kind and methodical. Joe didn’t seem quite as rural, moved quicker and wore more formal clothes. I never could read his handwriting.

They each had their own patients, but covered seamlessly for each other. They were like a pair of spouses in the sense that they answered to each other as much as to their patients. They had to make everything work for the benefit of their shared practice, their shared livelihood. Their mutual loyalty was essential and obvious, although allowing for their differences in temperament and personalities.

Invited to stay on and enter into a partnership, I hesitated. How did I fit in? Could I follow in their footsteps and become an equal partner, covering for them and doing things similarly enough to fit in for the long haul?

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Health in 2 Point 00, Episode 85 | Health 2.0 HIMSS Europe Final Thoughts

On Episode 85 of Health in 2 Point 00, it’s our last night in Helsinki. In this episode, Jess asks me about GE selling off Ventures, Neurotrack raising $21 million to detect and track dementia, and Allscripts acquiring ZappRx, a prescribing tool. Also, find out my favorite things from Health 2.0 HIMSS Europe, including a cool pill tracker, Popit, and a great panel on femtech (even though there were not enough men in the room). —Matthew Holt

Is Good, Human-Centered Design in Healthcare Possible? | frog Healthcare Lead Stefania Marcoli

By JESSICA DAMASSA, WTF HEALTH

Frog, the renowned design and strategy firm, has been involved in healthcare for a long time. So, how are they infusing human centered design into the healthcare process? What is frog’s perspective on how healthcare companies can integrate design thinking into their solutions? And most importantly, what does good design in healthcare look like?

Filmed at the Frontiers Health Conference in Berlin, Germany, November 2018.

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.

Remembering the Real Stakeholders: Patient Privacy Rights Comments on the Proposed CMS Regulation Pursuant to the Cures Act

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Deborah C. Peele
Adrian Gropper

By ADRIAN GROPPER, MD and DEBORAH C. PEEL, MD

Electronic health records (EHRs) are a polarizing issue in health reform. In their current form, they are frustrating to many physicians and have failed to support cost improvements. The current round of federal intervention is proposed rulemaking pursuant to the 21st Century Cures Act calls for penalties for “information blocking” and for technology that physicians and patients could use “without special effort.”

The proposed rules are over one thousand pages of technical jargon that aims to govern how one machine communicates with another when the content of the communication is personal and very valuable information about an individual. Healthcare is a challenging and unique industry when it comes to interoperability. Hospitals spend lavishly on EHRs and pursue information blocking as a means to manipulate the physicians and patients who might otherwise bypass the hospital on the way to health reform. The result is a broken market where physicians and patients directly control trillions of dollars in spending but have virtually zero market power over the technology that hospitals and payers operate as information brokers.

What follows below are comments by Patient Privacy Rights on the proposed rule. The common thread of our comments is the need to treat patients and physicians, not the data brokers, as the real stakeholders.

Comments to the ONC Rule

Overview: 21st Century health care innovation, policy, and practice is increasingly dependent on personal information. This is obvious with respect to machine learning and risk adjustment, but personal information is now central to the competitive strategy for most of the health care economy, clinical as well as research. ONC’s drafting of this rule reflects the importance of competition to innovation and cost containment.

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This Startup is Making Clinical Trials Easier to Run | Cyntegrity Co-Founder Artem Andrianov

By JESSICA DAMASSA, WTF HEALTH

Clinical trials are arduous and expensive, especially in this new regulatory climate. Cyntegrity, a new software tool has the potential to change the cost curve, by offering a dynamic, risk-based ecosystem for pharma, biotech, or medtech companies. Not only does Cyntegrity help these companies navigate protocol and regulation compliance, but they provide patient safety by identifying misconduct or fraud, and project management hazards. Best part? All mistakes are analyzed in real time. The alternative is somebody looking at a spreadsheet…terrifying!

Filmed at the Frontiers Health Conference in Berlin, Germany, November 2018.

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.

Health in 2 Point 00, Episode 84 | Health 2.0 HIMSS Europe, Part 2

Slide into Health in 2 Point 00 (or rather, Health 2.0 HIMSS Europe) with Jess and I today! On Episode 84, Jess asks me about the big news that CVS has now made it possible for employees to get reimbursed for Big Health’s Sleepio, an insomnia digital therapeutic, and about Atrium Health’s $10 million investment in an affordable housing plan, addressing the social determinants of health. Hear some of my key takeaways from the conference so far, too. –Matthew Holt

Medicare for All and Industry Consolidation

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By KEN TERRY

Far more attention has been devoted to the ways in which industry consolidation has driven up health costs than to proposals on how to remedy the situation. But the introduction of Medicare for All and Medicare for More bills—however dim their short-term prospects are—has changed the terms of the debate. It is time to think about how we can eliminate the market power of health systems without causing harmful dislocations in health care and the economy.

Before we get to that, here are the main facts about consolidation: As a handful of health insurers have become dominant in many markets, health systems have done likewise in order to maintain or improve their negotiating positions. That has proved to be an effective strategy in many cases. Even dominant health plans cannot do without the largest hospital systems in their areas, especially when they employ many of the local physicians.

According to a Kaufman Hall report, 90 hospital and health system deals were publicly announced in 2018. This was a decline from the 115 deals unveiled in 2017, but the average size in the revenue of sellers hit a high of $409 million.

The biggest provider mergers are staggering in scale. In February 2019, for example, Catholic Health Initiatives and Dignity Health formed a new organization called CommonSpirit Health, which has 142 hospitals, 150,000 employees and nearly $30 billion in revenues. The union of Chicago-based Advocate Health Care and Wisconsin’s Aurora Health Care in April 2018 created a giant with 27 hospitals and $11 billion in revenues. A month later, Atrium Health (formerly Carolinas Healthcare System) joined with Wake Forest Baptist Health to form a system with 49 hospitals and combined revenues of $7.5 billion.

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Better than Blue Zones? The Pioppi Protocol | Pioppi Protocol Filmmaker Donal O’Neill

By JESSICA DAMASSA, WTF HEALTH

You’ve probably heard of Blue Zones…but have you heard for the Pioppi Protocol? The southern Italian secret to longevity, healthy aging, and peace of mind has been the subject of a hit movie, with books in seven different languages. Now, the Pioppi Protocol is going digital with a new mobile app thanks to Cardiologist Dr Aseem Malhotra and filmmaker Donal O’Neill. Find out all about the yet-to-be-released app, and the gorgeous fishing village in Pioppi, Italy that inspired the entire movement.

Filmed at the Frontiers Health Conference in Berlin, Germany, November 2018.

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.

Why A Diverse and Inclusive Healthcare Innovation Workforce Matters

By ANDRÉ BLACKMAN

There I was, my 10th-grade science fair. My mother made sure I had a tie that fit properly and a shirt that was perfectly pressed. I stood among my peers with our cardboard presentation displays highlighting what we did to make it to this point. I was a little nervous but also extremely proud of myself and excited to see the looks on the judge’s faces when they saw what my project was about:

“The Effects of Enzymes on DNA”

Boom. Oh, I wasn’t doing something that many people had seen already — I was working inside an NIH facility with a brilliant scientist mentor/coach, to get this done. The memories of taking multiple modes of transportation after school throughout the week for what seemed like forever wore me down enough to make sure that I knew this was going to be worth it. And then after the judges were introduced to all of our concepts and families poured throughout the gymnasium to see what we all came up with — now was the moment of truth.

Sweaty palms and teenage anxiety wouldn’t deter me. First place goes to….oh ok, yeah of course, they deserved that. They worked really hard I’m sure. Second place goes to….oh wow, I didn’t make second place? At least, I’ll get something. After a third place winner was announced and the applause faded. I looked, stunned, over at my mother in the audience whose face was covered in tears. I was ready for the night to be over. Did I not wear the right tie? Did I seem too confident? Not confident enough? The questions would consume me until later that evening when my science teacher told me that the judges thought I cheated or didn’t actually do any of the work.

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