Doctor asking patient to fill out survey before medical treatment.

Key Considerations for Patient-Reported Outcome Measures

By Sharona Hoffman

Patient-reported outcome measures (PROMs) are questionnaires that patients fill out on tablets or other computers or devices. They ask patients to check boxes in answer to questions about their symptoms, treatment effects, and ability to function physically, emotionally, and socially. They thus may solicit very sensitive information about matters such as anxiety, depression, and sexual satisfaction. To illustrate, a query might be “in the past month, how often did you have a lot of trouble falling asleep,” and the patient is asked to check “never,” “rarely,” “sometimes,” “often,” or “always.”

PROM responses can be used for purposes of clinical care, research, quality improvement, Food and Drug Administration (FDA) approval of drugs and devices, and even insurance reimbursement. For example, insurers hypothetically could decide to decline coverage of particular treatments based on PROM responses indicating that many patients find them to be unhelpful.

I first became interested in patient-reported outcome measures because of an experience my husband had. Andy has Parkinson’s disease, and one of the neurologists he saw asked him to fill out a long questionnaire on a tablet computer before each appointment. This task was difficult for Andy because he had a hand tremor, and it was stressful because Andy worried that he would not have time to complete the survey before his appointment began. Moreover, Andy’s physician never referred to his responses and appeared never to look at them. Upon investigation, I found little to no analysis of PROMs in the legal literature, so Andy and I recently published a law review article about them.

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Doctor or surgeon with organ transport after organ donation for surgery in front of the clinic in protective clothing.

Organ Transplant Candidates Who Use Medical Cannabis Face Discrimination

By Hannah Rahim

Medical cannabis users in the U.S. face discrimination in seeking health care services, including restrictions against obtaining solid organ transplants.

Considering growing evidence that medical cannabis (which is legal in 38 states, 3 territories, and the District of Columbia) does not compromise post-transplant health outcomes, policymakers should rethink the use of cannabis consumption as a contraindicator to transplantation and should adopt legal protections to prevent undue discrimination towards medical cannabis users.

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Fertilized human egg cells dividing.

What the Law and Bioethics Tell Us About Synthetic Human Embryos

By Barbara Pfeffer Billauer

A synthetic embryo can now be constructed from very early pre-embryonic cells – without the need for an egg or sperm. These were initially created in mice. In April, researchers in China published about their creation of synthetic monkey embryos. In June, it was reported that the first synthetic human models were apparently created. This development throws a moral monkey-wrench into the current moratoria on embryonic research after 14 days. But there are more problems ahead.

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Hundred dollar bills rolled up in a pill bottle

Reasonable Pricing Clauses: A First Step Toward Ensuring Taxpayers a Fair Return on their Public R&D Investment

By Nikhil Chaudhry and Reshma Ramachandran

Earlier this month, the Department of Health and Human Services announced that it had successfully included a reasonable pricing provision in a $326M investment contract with Regeneron for development of a next generation monoclonal antibody therapy for COVID-19. This was the first time the Biden Administration had included such a provision as part of its research funding agreements with the private sector, demonstrating that it is indeed possible for the federal government to negotiate deals with pharmaceutical companies that ensure that products developed with public dollars are priced comparably to the global market.

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Health visitor and a senior woman during home visit.

Caring for Patients with Serious Illness: Insights from Kristofer Smith

Kristofer Smith, MD, MPP is the Chief Medical Officer of Landmark Heath, where he oversees efforts to establish a high-quality and clinically effective home-based medical care model for patients with serious illness.

We sat down with Dr. Smith to discuss his experience caring for patients with serious illness and developing programs to provide health care at home, among other topics. The following interview has been edited and condensed. Read More

Cover image of Ashley Shew's book, Against Technoableism.

Symposium Introduction: Addressing Technoableism: Reforming Infrastructure and Disability Representation

By Ashley Shew

Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement

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Austin, TX, USA - Oct. 2, 2021: Participants at the Women's March rally at the Capitol protest SB 8, Texas' abortion law that effectively bans abortions after six weeks of pregnancy.

Why Must Abortion Providers Needlessly Travel to Texas?

By Carmel Shachar

This year, the American Board of Obstetrics and Gynecology (ABOG) — the organization that runs the exam doctors must take to become certified in obstetrics and gynecology (OB-GYN) — is requiring all candidates to attend in-person examinations in Dallas, Texas. By doing so, ABOG is failing its duties to its membership by asking the practitioners who are most likely to provide abortion services to travel to a state with a legal regimen that is particularly hostile to them.

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Washington, DC – September 23, 2021: A person walks among the over 681,000 memorial white flags dedicated to each of the COVID Pandemic victims at the National Mall.

Running Cover for Death: Pandemic Minimizers Normalize an Inhumane Baseline

­­By Nate Holdren

Last week, David Leonhardt took to the pages of the New York Times to celebrate the latest COVID death figures, which he claims mean the U.S. is no longer in a pandemic, because there are no more “excess deaths.”

The hunger for good news is, of course, understandable amid this ongoing nightmare. But to respond to death with “smile everyone, it could have been more deaths!” is grotesque because of the disrespect to the dead and those most affected by the deaths.

It also lets the powerful off the hook, which is Leonhardt’s primary motivation, I assume. In other words, looking for good news is a political position.

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Diverse individuals having conference video call on tv screen monitor in meeting room.

Climate Resilience Planning: A Life-Saving Entry Point for Incorporating Disability Voices into Policy

By Rafaello Adler-Abramo

Incorporating disability issues into general resilience planning is not only a life-saving necessity, but also a timely opportunity for broader disability inclusion.

Resilience planning is currently expanding and often well-funded. It is expected to vary by locale and populations, so differing needs are assumed. Additionally, much resilience planning is being developed de novo, possibly allowing easier incorporation of disability needs in primary planning, rather than being relegated to “special needs” addenda. This strategy may represent a plausible on-ramp for mainstream incorporation of Disability needs and knowledge.

Recently, I successfully advocated for the incorporation of persons with disabilities’ (PWD) needs into a Massachusetts state-facilitated municipal resilience planning program, in time for their five-year update. While planners’ guidance previously urged attention to needs of numerous groups identified as experiencing heightened vulnerability, PWDs’ specific needs had not yet been included.

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