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Category: The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?

Contact Tracing: 10 Unique Challenges of COVID-19

Deven McGraw
Eric Perakslis
Vince Kuraitis

By VINCE KURAITIS, ERIC PERAKSLIS, and DEVEN McGRAW

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 worldwide dialog about COVID-19 contact tracing is underway. Even under the best of circumstances, the contact tracing process can be difficult, time-consuming, labor-intensive, and invasive — requiring rigorous, methodical execution and follow-up.

COVID-19 throws curve balls at the already difficult process of contact tracing. In this post we will provide some basic background on contact tracing and will list and describe 10 challenges that make contact tracing of COVID-19 exceptionally difficult. The 10 unique challenges are:

1) COVID-19 is Highly Contagious and Deadly

2) Contact Tracing is Becoming Politicized

3) We Lack Scientific Understanding of COVID-19

4) Presymptomatic Patients Can Spread COVID-19

5) Asymptomatic Patients Can Spread COVID-19

6) Contact Tracing is Dependent on Availability of Testing

7) Contact Tracing is Dependent on New, Extensive Funding

8) Contact Tracing is Dependent on an “Army of Tracers” and Massive Support for Patients

9 ) The Role of Technology is Unclear — Is it Critical Support or a Distraction?

10) The U.S. Response Has Been Fragmented and Inconsistent

The thrust of this post is about traditional boots-on-the-ground contact tracing conducted by public health agencies. We will touch on a few aspects of digital contact tracing (e.g., smartphone apps), but we’ll go into much more depth on digital contact tracing in future posts.

How does contact tracing relate to the theme of this series — The Health Data Goldilocks Dilemma? It’s about obtaining the right amount and types of information — not too much, not too little. Not too much data so that privacy rights or civil liberties are infringed, or that contact tracers are overwhelmed with useless data; not too little data so that public health agencies aren’t handcuffed in protecting our safety in tracing COVID-19 cases.

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The New Scarlet Letter

By KIM BELLARD

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.

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Getting Ahead of Privacy and the CCPA – Healthcare Needs to Move Beyond HIPAA

By DAN LINTON

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.

Privacy concerns are on the rise. Over the last couple of years, survey after survey have clearly shown a dramatic rise in overall consumer privacy awareness and concern – driven primarily by the never-ending litany of ongoing data breaches that make the news.

The healthcare industry has been somewhat shielded from this, seemingly due to the trust that patients extend to their doctors and, by proxy, the organizations they work with. HITECH and HIPAA legislation have acted as a perceived layer of safety and protection.

But healthcare is not immune from privacy issues.

Most people aren’t even aware of the hundreds of data breaches of unsecured health information in the last 24 months which are being investigated by the U.S. Department of Health & Human Services Office for Civil Rights. In fact, research indicates that consumers still trust healthcare organizations with their data more so than many other industries.

But for how much longer?

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Healthcare in the National Privacy Law Debate

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.

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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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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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Why Should Anyone Care About Health Data Interoperability?

By SUSANNAH FOX

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.

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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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Protecting Health Data Outside of HIPAA: Will the Protecting Personal Health Data Act Tame the Wild West ?

Vince Kuraitis
Deven McGraw

By DEVEN McGRAW and VINCE KURAITIS

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.

HHS and ONC recently issued a Notice of Proposed Rulemaking (NPRM) to Improve the Interoperability of Health Information. This proposed rule has received over 2,000 comments, many of which raised significant issues about how the rule potentially conflicts with patient and provider needs for data privacy and security.

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.”

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Health Data Outside HIPAA: The Wild West of Unprotected Personal Data

Deven McGraw
Vince Kuraitis

By VINCE KURAITIS and DEVEN McGRAW

This post is part of the series “The Health Data Goldilocks Dilemma: Privacy? Sharing? Both?”

“…the average patient will, in his or her lifetime, generate about 2,750 times more data related to social and environmental influences than to clinical factors”

McKinsey analysis

The McKinsey “2,750 times” statistic is a pretty good proxy for the amount of your personal health data that is NOT protected by HIPAA and currently is broadly unprotected from sharing and use by third parties.

However, there is bipartisan legislation in front of Congress that offers expanded privacy protection for your personal health data. Senators Klobuchar & Murkowski have introduced the “Protecting Personal Health Data Act” (S.1842). The Act would extend protection to much personal health data that is currently not already protected by HIPAA (the Health Insurance Portability and Accountability Act of 1996). 

In this essay, we will look in the rear-view mirror to see how HIPAA has provided substantial protections for personal clinical data — but with boundaries. We’ll also take a look out the windshield — the Wild West of unprotected health data.

Then in a separate post, we’ll describe and comment on the pending “Protect Personal Health Data Act”.

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