Tag: Deven McGraw

Contact Tracing: 10 Unique Challenges of COVID-19

Jun 12, 2020• 1

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.

THCB Gang, Episode 13

Jun 11, 2020

Episode 13 of “The THCB Gang” was on Thursday, June 11th. Watch it below or on our YouTube Channel.

Matthew Holt (@boltyboy)was back on the moderating chair! Joining him were patient advocate Grace Cordovano (@GraceCordovano), patient safety expert Michael Millenson (MLMillenson), policy expert Vince Kuraitis (@VinceKuraitis), MD & hospital system exec Raj Aggarwal (@docaggarwal), data privacy expert Deven McGraw (@healthprivacy) and fierce journalist & data rights activist Casey Quinlan (@MightyCasey). This was a doozy, and the conversation ranged from what it’s like re-opening at a big academic medical center to data flow and public health in Taiwan to statues of Confederate losers in Richmond. Not to mention what will happen in the impeding second wave.

If you’d rather listen, the “audio only” version is preserved as a weekly podcast available on our iTunes & Spotify channels — Zoya Khan

THCB Gang, Episode 10 LIVE 1PM PT/4 PM ET 5/21

May 20, 2020

Episode 10 of “The THCB Gang” was live-streamed on Thursday, May 21th

Joining me were regulars: writer Kim Bellard (@kimbbellard), policy expert Vince Kuraitis (@VinceKuraitis), patient advocate Grace Cordovano (@GraceCordovano), radiologist Saurabh Jha (@RogueRad), employer consultant Brian Klepper (@bklepper1), Deven McGraw (@healthprivacy) and a guest, former ONC Consumer head Lygeia Riccardi, now at Carium Health (@Lygeia)! The conversation moved onto the new normal of telehealth, how much things would change in the future, and what the story with testing and opening up would look like. You can see the video below

If you’d rather listen, the “audio only” version is preserved as a weekly podcast available on our iTunes & Spotify channels — Matthew Holt

THCB Gang: Episode 8 LIVE 1PM PT/4PM ET, 5/7

May 7, 2020

Episode 8 of “The THCB Gang” was live-streamed on Thursday, May 7th at 1pm PT- 4pm ET! You can see it below.

Joining me were our regulars: patient advocate Grace Cordovano (@GraceCordovano), data privacy lawyer Deven McGraw (@HealthPrivacy), policy expert Vince Kuraitis (@VinceKuraitis), radiologist Saurabh Jha (@RogueRad) (who snuck in late), and writer Kim Bellard (@Kimbbellard). We had a great conversation including a lot of detail around access to patient records, and some fun about infectious disease epidemiologists behaving badly! If you’d rather listen, the “audio only” version is preserved as a weekly podcast available on our iTunes & Spotify channels from Friday— Matthew Holt

The THCB Gang: Episode 5

Apr 15, 2020

Episode 5 of “The THCB Gang” was live-streamed Thursday, April 16 at 1pm PT- 4pm ET! 4-6 semi-regular guests drawn from THCB authors and other assorted old friends of mine will shoot the sh*t about health care business, politics, practice, and tech. It tries to be fun but serious and informative! If you miss it, it will also be preserved as a weekly podcast available on our iTunes & Spotify channels.

Deven McGraw (@healthprivacy), Kim Bellard (@kimbbellard), Grace Cordovano (@gracecordovano), Michael Millenson (@MLMillenson), and Dave deBronkhart (@ePatientDave) all discussed the recent news surrounding COVID-19, and their guesses on how it will impact the landscape of health care; from policy to practice — Matthew Holt

The THCB Gang Episode 3, (LIVE Today at 1PM PT/4PM ET)

Apr 2, 2020

Each week an episode of “The THCB Gang” (this was Episode 3) is streamed live here (below) and is also preserved as a weekly podcast and available on our Itunes & Spotify channels a day or so later. Each week 4-6 semi-regular guests drawn from THCB authors and other assorted old friends of mine will shoot the shit about health care business, politics, practice, and tech. It tries to be fun but serious and informative!

This week, joining me were Deven McGraw (@healthprivacy), Kim Bellard (@kimbbellard), Vince Kuraitis (@VinceKuraitis), Michael Millenson (@MLMillenson), Brian Klepper (@bklepper1), Grace Cordovano (@gracecordovano) & Daniel O’Neill (@dp_oneill). It was an argumentative discussion about the developments around COVID19 and what we should pay attention to next week — Matthew Holt

Health Data Outside HIPAA: Simply Extending HIPAA Would Be a #FAIL

Jan 20, 2020• 2

By DEVEN McGRAW and VINCE KURAITIS

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.

The Health Data Goldilocks Dilemma | Vince Kuraitis & Deven McGraw

Nov 4, 2019

By JESSICA DaMASSA, WTF HEALTH

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.

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

Aug 19, 2019• 2

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.”

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

Aug 12, 2019• 2

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”.