A frustrated woman sits at her desk, staring at her computer. Her head is resting in her hand

Patient-Directed Uses vs. The Platform

By Adrian Gropper, MD

This post originally appeared on The Health Care Blog.

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: Read More

Close up of a computer screen displaying code

What Google Isn’t Saying About Your Health Records

By Adrian Gropper

Google’s semi-secret deal with Ascension is testing the limits of HIPAA as society grapples with the future impact of machine learning and artificial intelligence.

I. Glenn Cohen points out that HIPAA may not be keeping up with our methods of consent by patients and society on the ways personal data is used. Is prior consent, particularly consent from vulnerable patients seeking care, a good way to regulate secret commercial deals with their caregivers? The answer to a question is strongly influenced by how you ask the questions.

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Diverse crowd of adults on a bus, all using smartphones

ACCESS Act Points the Way to a Post-HIPAA World

By Adrian Gropper

The October 22 announcement starts with: “U.S. Sens. Mark R. Warner (D-VA), Josh Hawley (R-MO) and Richard Blumenthal (D-CT) will introduce the Augmenting Compatibility and Competition by Enabling Service Switching (ACCESS) Act, bipartisan legislation that will encourage market-based competition to dominant social media platforms by requiring the largest companies to make user data portable – and their services interoperable – with other platforms, and to allow users to designate a trusted third-party service to manage their privacy and account settings, if they so choose.”

Although the scope of this bill is limited to the largest of the data brokers (messaging, multimedia sharing, and social networking) that currently mediate between us as individuals, it contains groundbreaking provisions for delegation by users that is a road map to privacy regulations in general for the 21st century.

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Twitter Round Up

This week’s twitter round up features a variety of topics from our contributors, from discussions about the troubles of patient matching to generic drug labeling and the readmission penalty.

Adrian Gropper shared a link to the most recent entry of his The Health Care Blog entitled “What You Need To Know About Patient Matching and Your Privacy and What You Can Do About It” in which he compares patient matching to “NSA surveillance.”

Amitabh Chandra tweeted that “the current readmission penalty, however well-intentioned, sure looks like a tax on minority and indigent serving hospitals.”

Frank Pasquale shared an article about the myths of high-protein diets and the potential consequences, including the quote that there is a “strong association between longevity and a low-protein, high-carbohydrate diet.”

I. Glenn Cohen shared a link to an article about “Intersextion: Germany Allows Patient to Choose ‘No Sex’ on Birth Certificate” and poses the question of whether or not the United States should follow Germany’s example in making such an allowance.

Kate Greenwood retweeted Alexander Gaffney including a link to a discussion of the new arguments being made about the generic drug labeling rule: “Opponents, Proponents of Generic Drug Labeling Rule Unleash New Argument and Supporters.”

Twitter Round-up 10/22

By Sara Providence

This week, our contributors tweeted quite a bit about the Affordable Care Act, but also about vaccination, the cost of extending life, and the budgetary impact of preventive health policy.

Amitabh Chandra (@AmitabhChandra2) tweeted the piece “The Cost of Living,” a New York Magazine article about the dilemma posed by very expensive cancer drugs that extend life only by a few dozen days. His opinion on the article: “If there is only one article that you read on healthcare this year, make it this one.” (10/22)

Frank Pasquale (@FrankPasquale) tweeted Paul Krugman’s blog post, “Maybe Economics is a Science, but Many Economists are not Scientists.” Krugman raises the question of whether economists are actually using the evidence garnered in their studies to inform policy debates, using healthcare as an example. (10/21)

Adrian Gropper (@agropper), our newest contributor, tweeted his own blog post: “State Surveillance Endangers the Affordable Care Act: A Case Study.” He uses Massachusetts as a lens to discuss the issues caused by state monitoring of individual health information. (10/18)

Art Caplan (@ArthurCaplan) tweeted a BBC report that a judge in the UK ordered two sisters to receive the MMR vaccine. The ruling represents the latest perspective on the benefits of the vaccine versus its risks. (10/17)

Amitabh Chandra (@AmitabhChandra2) tweeted a report by the New England Journal of Medicine on the effect of cigarette taxes on the Federal budget. The analysis, performed by the Congressional Budget Office, highlights the complexity of determining the effects of health policy on the deficit. In Chandra’s opinion, it “exposes [the] sloppiness of prevention arguments.” (10/17)

Richard Epstein (@RichardAEpstein) tweeted his blog post, “The Obamacare Train Wreck,” about his take on how to improve the Affordable Care Act. In the post, he touches on ideas to “fix” the exchanges, the employer mandate, the coverage structure, etc. (10/14)

Introducing Contributor Adrian Gropper

Adrian Gropper, MD is CTO of Patient Privacy Rights, a national organization representing 10.3 million patients. As an entrepreneur and physician-developer he has founded a number of software-intensive medical device companies. He has also participated in the creation of Blue Button, Direct Project, and Blue Button Plus, and is active in promoting open and patient-centered data policy. He holds an engineering degree from MIT and an MD from Harvard Medical School.

Representative Publications

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