Illustration of multicolored profiles. An overlay of strings of ones and zeroes is visible

We Need to Do More with Hospitals’ Data, But There Are Better Ways

By Wendy Netter Epstein and Charlotte Tschider

This May, Google announced a new partnership with national hospital chain HCA Healthcare to consolidate HCA’s digital health data from electronic medical records and medical devices and store it in Google Cloud.

This move is the just the latest of a growing trend — in the first half of this year alone, there have been at least 38 partnerships announced between providers and big tech. Health systems are hoping to leverage the know-how of tech titans to unlock the potential of their treasure troves of data.

Health systems have faltered in achieving this on their own, facing, on the one hand, technical and practical challenges, and, on the other, political and ethical concerns.

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Illustration of a man and a woman standing in front of a DNA helix

A Proposal for Localized Review to Safeguard Genetic Database Privacy

By Robert I. Field, Anthony W. Orlando, and Arnold J. Rosoff

Large genetic databases pose well-known privacy risks. Unauthorized disclosure of an individual’s data can lead to discrimination, public embarrassment, and unwanted revelation of family secrets. Data leaks are of increasing concern as technology for reidentifying anonymous genomes continues to advance.

Yet, with the exception of California and Virginia, state legislative attempts to protect data privacy, most recently in Florida, Oklahoma, and Wisconsin, have failed to garner widespread support. Political resistance is particularly stiff with respect to a private right of action. Therefore, we propose a federal regulatory approach, which we describe below.

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Home innovation technology concept illustration.

Call for Abstracts — 2022 Petrie-Flom Center Annual Conference: Diagnosing in the Home

Contribute to the 2022 Petrie-Flom Center Annual Conference and subsequent book project!

Through October 14, 2021, the Petrie-Flom Center is accepting abstracts for its annual conference. The 2022 annual conference will focus on ethical, legal, and regulatory challenges and opportunities around at home digital health technology.

This conference will engage with the vision for a 21st century health care system that embraces the potential of at home digital products to support diagnoses, improve care, encourage caregivers, maximize pandemic resilience, and allow individuals to stay within the home when preferable. The goals of this conference and subsequent book project are to consider the ethical, sociological, regulatory, and legal challenges and opportunities presented by the implementation of digital products that support clinical diagnosis and/or treatment in patients’ homes over the next decade.

Interested in submitting an abstract, but want to know more about what we’re looking for? Read through the following frequently asked questions.

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Patient receives Covid-19 vaccine.

10 Design Considerations for Vaccine Credentials

By Adrian Gropper

As COVID-19 vaccines become widely, if not fairly, available in different regions, both the public and private sector are working to develop vaccine credentials and associated surveillance systems.

Information technology applied to vaccination can be effective, but it can also be oppressive, discriminatory, and counter-productive.

But these systems can be tuned to reflect and address key concerns.

What follows is a list of ten separable concerns, and responsive design strategies. The concept of separation of concerns in technology design offers a path to better health policy. Because each concern hardly interacts with the others, any of them can be left out of the design in order to prioritize more important outcomes. Together, all of them can maximize scientific benefit while enhancing social trust.

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Drone hovering in air above mountain range.

Drone-Enabled Pharmaceutical Delivery: Navigating Regulatory Turbulence

By Vrushab Gowda

The burgeoning industry of drone-enabled pharmaceutical delivery offers a number of advantages over its low-tech forebears, not least including patient convenience.

It minimizes exposure to infection and potentially protects patient anonymity, all while reducing wait times relative to in-person or traditional mail-order pharmacies. Additionally, drones can broaden access to medications in resource-poor areas, including locations with low densities of health care facilities, and those where underdeveloped transportation links hinder ground delivery.

However, drone delivery of pharmaceuticals enters into a nebulous legal environment, sitting as it does at the intersection of healthcare, privacy law, and aviation regulation. It is, moreover, a dynamic landscape, which continues to evolve with new federal rules, judicial decisions, and corporate practices.

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Senior citizen woman in wheelchair in a nursing home.

Telehealth and the Future of Long-Term Care

Join us on Wednesday, April 7 for further discussion of these issues during our virtual event, “Triumphs & Tensions of the Telehealth Boom.

By Tara Sklar

The COVID-19 pandemic accelerated the trend away from providing health care and long-term care in institutional settings in ways not previously imagined; the result of a reckoning with the massacre that disproportionately killed hundreds of thousands of older adults living in nursing homes or similar congregate facilities, along with the staff who cared for them.

Beyond the immediate staffing and infection control issues at hand, this juncture leads to a larger question, in the U.S. and abroad: how can we best care for an older population in the decades — and not just years — ahead?

The major advances and shortfalls that have surfaced during the pandemic around telehealth and its related technologies in digital home health care are essential to this discussion.

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Doctor Holding Cell Phone. Cell phones and other kinds of mobile devices and communications technologies are of increasing importance in the delivery of health care. Photographer Daniel Sone.

Viewing Telehealth Policymaking Through the Lens of Disability

Join us on Wednesday, April 7 for further discussion of these issues during our virtual event, “Triumphs & Tensions of the Telehealth Boom.

By Laura C. Hoffman

As a means for delivering health care, telehealth will only be as successful as it is accessible to our most vulnerable populations.

Although the utilization of telehealth has the great potential to increase access to health care while simultaneously reducing barriers to access for individuals, people with disabilities face multiple barriers to telehealth. The COVID-19 pandemic has further highlighted these challenges.

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Apple watch and fit bit.

Beyond HIPAA: A Proposed Self-Policing Framework for Digital Health Products

By Vrushab Gowda

As digital health products proliferate, app developers, hardware manufacturers, and other entities that fall outside Health Insurance Portability and Accountability Act (HIPAA) regulation are collecting vast amounts of biometric information. This burgeoning market has spurred patient privacy and data stewardship concerns.

To this end, two policy nonprofits – the Center for Democracy and Technology (CDT) and the eHealth Initiative (eHI) – earlier this month jointly published a document detailing self-regulatory guidelines for industry. The following piece traces the development of the “Proposed Consumer Privacy Framework for Health Data,” provides an overview of its provisions, and offers critical analysis.

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Code on computer.

How to Secure Our Digital Health Infrastructure Against Cyber Attacks

By Vrushab Gowda

Our health information infrastructure is highly susceptible to cyber attacks. At the time of writing, the Department of Health and Human Services (HHS) is actively investigating over 700 major breaches over the past 24 months alone.

It is incumbent upon our institutions to proactively guard against these threats, with our federal government leading the charge.

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Person typing on computer.

Online Terms of Use for Genealogy Websites – What’s in the Fine Print?

By Jorge L. Contreras

Since genealogy websites first went online, researchers have been using the data that they contain in large-scale epidemiological and population health studies. In many cases, data is collected using automated tools and analyzed using sophisticated algorithms.

These techniques have supported a growing number of discoveries and scientific papers. For example, researchers have used this data to identify genetic markers for Alzheimer’s Disease, to trace an inherited cancer syndrome back to a single German couple born in the 1700s, and to gain a better understanding of longevity and family dispersion.  In the last of these studies, researchers analyzed family trees from 86 million individual genealogy website profiles.

Despite the scientific value of publicly-available genealogy website information, and its free accessibility via the Internet, it is not always the case that this data can be used for research without the permission of the site operator or the individual data subjects.

In fact, the online terms of use (TOU) for genealogy websites may restrict or prohibit the types of uses for data found on those sites.

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