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.
If you live in one of the jurisdictions that have imposed stay-at-home requirements, you’re probably making your essential excursions — grocery store, pharmacy, even walks — with a wary eye towards anyone you come across. Do they have COVID-19? Have they been in contact with anyone who has? Are they keeping at least the recommended six feet away from you? In short, who is putting you at risk?
Well, of course, this
being the 21st century, we’re turning to our smartphones to help us try to
answer these questions. What this may lead to remains to be seen.
We long ago seemed to
shrug off the fact that our smartphones and our apps know where we are and
where we have been. No one should be surprised that location is of
importance to tracking the spread of COVID-19. No one should be surprised
that it is already being used. We may end up being surprised at how it
will be used.
This article originally appeared in the American Bar Association’s Health eSource here.
By KIRK NAHRA
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.
Congress is debating whether to enact a national privacy law. Such a law would upend the approach that has been taken so far in connection with privacy law in the United States, which has either been sector specific (healthcare, financial services, education) or has addressed specific practices (telemarketing, email marketing, data gathering from children). The United States does not, today, have a national privacy law. Pressure from the European Union’s General Data Protection Regulation (GDPR)1 and from California, through the California Consumer Privacy Act (CCPA),2 are driving some of this national debate.
The conventional wisdom is that, while the United States is moving towards this legislation, there is still a long way to go. Part of this debate is a significant disagreement about many of the core provisions of what would go into this law, including (but clearly not limited to) how to treat healthcare — either as a category of data or as an industry.
So far, healthcare data may not be getting enough attention in the debate, driven (in part) by the sense of many that healthcare privacy already has been addressed. Due to the odd legislative history of the Health Insurance Portability and Accountability Act of 1996 (HIPAA),3 however, we are seeing the implications of a law that (1) was driven by considerations not involving privacy and security, and (2) reflected a concept of an industry that no longer reflects how the healthcare system works today. Accordingly, there is a growing volume of “non-HIPAA health data,” across enormous segments of the economy, and the challenge of figuring out how to address concerns about this data in a system where there is no specific regulation of this data today.
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.
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.
Which is better: sharing access to all health data across platforms so that interoperability is achieved, or protecting some data for the sake of privacy? Health data privacy experts Vince Kuraitis, founder of Better Health Technologies, and Deven McGraw, Chief Regulatory Officer at Ciitzen, are crowdsourcing opinions and insights on what they are calling The Health Data Goldilocks Dilemma. How much data protection is ‘juuuust right’? What should be regulated? And, by whom? The duo talks through their views on the data protection conversation and urge others to join in the conversation via their blog series called, “The Health Data Goldilocks Dilemma,” on The Health Care Blog.
Filmed at the HIMSS Health 2.0 Conference in Santa Clara, CA in September 2019.
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 question I hear quite often, sometimes whispered, is: Why should anyone care about health data interoperability? It sounds pretty technical and boring.
If I’m talking with a “civilian” (in my world, someone not obsessed with health care and technology) I point out that interoperable health data can help people care for themselves and their families by streamlining simple things (like tracking medication lists and vaccination records) and more complicated things (like pulling all your records into one place when seeking a second opinion or coordinating care for a chronic condition). Open, interoperable data also helps people make better pocketbook decisions when they can comparison-shop for health plans, care centers, and drugs.
Sometimes business leaders push back on the health data rights movement, asking, sometimes aggressively: Who really wants their data? And what would they do with it if they got it? Nobody they know, including their current customers, is clamoring for interoperable health data.
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.
This post is part of the series “The Health Data Goldilocks Dilemma: Privacy? Sharing? Both?”
Introduction
In our previous post, we described the “Wild West of Unprotected Health Data.” Will the cavalry arrive to protect the vast quantities of your personal health data that are broadly unprotected from sharing and use by third parties?
Congress is seriously considering legislation to better
protect the privacy of consumers’ personal data, given the patchwork of
existing privacy protections. For the most part, the bills, while they may
cover some health data, are not focused just on health data – with one
exception: the “Protecting Personal Health Data Act” (S.1842), introduced by
Senators Klobuchar and Murkowski.
In this series, we committed to looking across all of the
various privacy bills pending in Congress and identifying trends,
commonalities, and differences in their approaches. But we think this bill,
because of its exclusive health focus, deserves its own post. Concerns about
health privacy outside of HIPAA are receiving increased attention in light of
the push for interoperability, which makes this bill both timely and
potentially worth of your attention.
For example, greater interoperability with patients means that even more medical and claims data will flow outside of HIPAA to the “Wild West.” The American Medical Association noted:
“If patients access their health
data—some of which could contain family history and could be sensitive—through
a smartphone, they must have a clear understanding of the potential uses of
that data by app developers. Most patients will not be aware of who has access
to their medical information, how and why they received it, and how it is being
used (for example, an app may collect or use information for its own purposes,
such as an insurer using health information to limit/exclude coverage for
certain services, or may sell information to clients such as to an employer or
a landlord). The downstream consequences of data being used in this way may
ultimately erode a patient’s privacy and willingness to disclose information to
his or her physician.”
On Episode 3 of HardCore Health, Jess & I start off by discussing all of the health tech companies IPOing (Livongo, Phreesia, Health Catalyst) and talk about what that means for the industry as a whole. Zoya Khan discusses the newest series on THCB called, “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?”, which follows & discuss the legislation being passed on data privacy and protection in Congress today. We also have a great interview with Paul Johnson, CEO of Lemonaid Health, an up-and-coming telehealth platform that works as a one-stop-shop for a virtual doctor’s office, a virtual pharmacy, and lab testing for patients accessing their platform. In her WTF Health segment, Jess speaks to Jen Horonjeff, Founder & CEO of Savvy Cooperative, the first patient-owned public benefit co-op that provides an online marketplace for patient insights. And last but not least, Dr. Saurabh Jha directly address AI vendors in health care, stating that their predictive tools are useless and they will not replace doctors just yet- Matthew Holt
Matthew Holt is the founder and publisher of The Health Care Blog and still writes regularly for the site.
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