Medical Professionals with Disabilities Workforce and their Associated Challenges

By Paulchris Okpala

person wearing medical scrubs

Do the provisions of the 2008 Americans with Disabilities Act Amendments Act (ADAAA) address challenges faced by medical professionals with disabilities (MPD)?

A 2012 report on Americans with disabilities from the US Census Bureau suggests that it is highly unlikely. There is every reason to be alarmed by the increasing number of medical professionals with disabilities who leave their jobs, or express the intention to quit employment. There is also a rapidly decreasing number of MPD who express the desire to seek employment. Could this trend be attributed to the challenges faced by the MPD in the workplace?

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Dementia, Disability, and Advance Medical Directives

By Rebecca Dresser

pencil drawing of a brain Anyone fortunate enough to live beyond middle age faces a risk of developing dementia. Dementia is a widely feared disability. People often say they wouldn’t want to live if they developed the condition.  

Experts in law and ethics praise advance directives, or instructions to follow on behalf of patients, as a tool giving people control over the life-sustaining medical care they later receive as mentally impaired dementia patients. Some advance directive supporters also want the law to recognize advance requests to withhold ordinary food and water in the late stages of dementia. And some argue that the U.S. should follow the Netherlands in allowing doctors to give lethal drugs to people who made advance directives asking for assisted death if dementia makes them unable to live at home or to recognize their loved ones.  

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The EU’s GDPR in the Health Care Context 

Photo by Descrier/Flickr

By Sara Gerke 

The EU’s General Data Protection Regulation, which came into force two years ago but became directly applicable in all EU Member States only last week, aims to establish an equal level of protection for the rights and freedoms of natural persons with regard to the processing of personal data in all EU Member States.

Each of us has been inundated with emails in the last few days and weeks, informing us about the GDPR and asking us, among other things, to review updated privacy policy. This flood of emails is, in particular, the consequence of the GDPR’s imposing administrative fines for infringements.

According to its territorial scope, the GDPR can also impact US companies that process personal data of data subjects who are in the EU. For example, this is the case for newspapers and affiliated websites, where the processing activities are related to the offering of services or goods, irrespective of whether payment is required. Some papers decided to simply block users in the EU, rather than abide by the GDPR’s provisions. 

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Epistemic Injustice, Disability Stigma and Public Health Law

long staircase

By Daniel Goldberg

Public health law can integrate medical and social understandings of disability in ways that promise to reduce disability stigma and enhance epistemic justice.

However, models of disability currently embedded in public health law do precisely the opposite, at least partly due to the fact that public health laws have historically assimilated medicalized models of disability.

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2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
June 1, 2018 8:00 AM – 5:00 PM
Wasserstein Hall, Milstein East ABC (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2018 annual conference, entitled: “Beyond Disadvantage: Disability, Law, and Bioethics.” This year’s conference is organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

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Are Ordeals a Viable Way to Improve Health Care Delivery?

By Thomas W. Feeley

We constantly hear that the American health care system is broken and badly in need of repair. Our system provides poor value in that our per capita spending is more than any other nation in the world and yet we do not have the best health outcomes.

For many years, incremental solutions have been brought forward as solutions to our health care delivery problem. Approaches such as using evidence-based guidelines, focusing on patient safety, requiring prior authorization of expensive procedures, making patients pay as customers, adopting lean, six-sigma, electronic records, and using care coordinators, to name just a few, have failed to solve the problem.

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Introducing Blogger Nicholas Diamond

Nicholas J. Diamond, J.D., LL.M., M.B.E. is joining Bill of Health as a regular contributor.

Nick is an advisor and educator, focused on the intersection of public health, policy, and ethics. He works at an advisory firm in Washington, DC, where he helps biopharmaceutical companies, health insurers, and advocacy organizations better understand and respond to changes in the healthcare landscape. He also teaches part-time at Georgetown Law and George Washington, and holds (non-teaching) academic affiliations at the Perelman School of Medicine at the University of Pennsylvania. Continue reading

Introducing Blogger Tara Sklar

The Petrie-Flom Center is pleased to welcome Tara Sklar to Bill of Health as our newest contributor!

Tara is a Professor of Health Law and Director of the Graduate Health Sciences Programs at the University of Arizona James E. Rogers College of Law. She also holds an appointment as a Health Law Fellow in the Law and Public Health Group at the University of Melbourne, School of Population and Global Health. Prior to this she was the Founding Director of Aging Programs at the University of Melbourne, and in 2016 was awarded University of Melbourne’s Teaching Excellence in Innovation Award. She has particular interests in laws and regulations that impact population well-being, with a focus on older adults. Continue reading

Bill of Health Blog Symposium: Research Integrity and Trustworthy Science: Challenges & Solutions

We are pleased to host this symposium featuring commentary from participants in the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences event, “Research Integrity and Trustworthy Science: Challenges and Solutions.”  Below, Susan M. Wolf tees up the issues.  All posts in the series will be available here.

By Susan M. Wolf, JD (Chair, Consortium on Law and Values in Health, Environment & the Life Sciences; McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine, University of Minnesota)

Trustworthy science is crucial to progress in scientific understanding, patient care, and product development. Yet threats to the integrity of science and to public confidence loom large. Researcher misconduct, inadequate education of new researchers, concerns over the reproducibility and rigor of scientific research, predatory journals that fail to perform thorough peer review, and oversight lapses all constitute significant threats to sound science and public trust.

A 2017 report from the National Academies on Fostering Integrity in Research carefully analyzed “detrimental research practices.” The report called for significant changes in the policies and practices of journals, research institutions, and researchers. Among the proposals was creation of a Research Integrity Advisory Board (RIAB) as an independent nonprofit. Further recommendations called for changes to allow researchers to reproduce results, including archiving datasets and code.

In March 2018, the University of Minnesota responded to the emerging research challenges and solutions by sponsoring a conference on “Research Integrity and Trustworthy Science: Challenges and Solutions.” We invited leading analysts to address the challenges for researchers, journals, and research institutions. In this blog symposium, plenary speakers from the conference examine three foundational elements of credible research:

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Challenges for Investigators—Generating Reproducible Research Results

This post is part of a series on emerging research challenges and solutions. The introduction to the series is available here, and all posts in the series are available here.

By John P.A. Ioannidis, MD, DSc, C.F. Rehnborg Chair in Disease Prevention, Professor of Medicine, of Health Research and Policy, of Biomedical Data Science, and of Statistics, and Co-Director, Meta-Research Innovation Center at Stanford (METRICS), Stanford University

Generating reproducible research results is not an easy task. As discussions about a reproducibility crisis become more common and occasionally heated, investigators may feel intimidated or even threatened, caught in the middle of the reproducibility wars. Some feel that the mounting pressure to deliver (both quantity and quality) may be threatening the joy of doing science and even the momentum to explore bold ideas. However, this is a gross misunderstanding. The effort to understand the shortcomings of reproducibility in our work and to find ways to improve our research standards is not some sort of externally imposed police auditing. It is a grassroots movement that stems from scientists themselves who want to improve their work, including its validity, relevance, and utility.

As it has been clarified before, reproducibility of results is just one of many aspects of reproducibility. It is difficult to deal with it in isolation, without also considering reproducibility of methods and reproducibility of inferences. Reproducibility of methods is usually impossible to assess, because unfortunately the triplet of software, script/code, and complete raw data is hardly ever available in a complete functional form. Lack of reproducibility of inferences leads to debates, even when the evidence seems strong and well-rounded. Reproducibility of results, when considered in the context of these other two reproducibility components, is unevenly pursued across disciplines. Some fields like genetic epidemiology have long understood the importance of routinely incorporating replication as a sine qua non in their efforts. Others still consider replication as second-class, “me too” research. Nevertheless, it can be shown (see Ioannidis, Behavioral and Brain Sciences, in press), that in most circumstances replication has at least the same value—and often more value—than original discovery. However, this leads to the question: how do we reward and incentivize investigators to follow a reproducible research path?

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Challenges for Journals—Encouraging Sound Science

This post is part of a series on emerging research challenges and solutions. The introduction to the series is available here, and all posts in the series are available here.

By Barbara A. Spellman, Professor of Law and Professor of Psychology, University of Virginia School of Law

Journals and scientists should be BFFs. But currently they are frenemies. Or, in adult-speak:

Journals play an important role in ensuring that the scientific enterprise is sound. Their most obvious function is to publish science—good science, science that has been peer-reviewed by experts and is of interest to a journal’s readership. But in fulfilling that mission, journals may provide incentives to scientists that undermine the quality of published science and distort the scientific record.

Journal policies certainly contributed to the replication crisis. As businesses, publishers (appropriately) want to make money; to do so they need people to buy, read, and cite their journals. To make that happen, editors seek articles that are novel, that confirm some new hypothesis, and that have clear results. Scientists know that editors want articles with these qualities. Accordingly, scientists may (knowingly or not) bias the scientific process to produce that type of result.

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Systems Matter: Research Environments and Institutional Integrity

This post is part of a series on emerging research challenges and solutions. The introduction to the series is available here, and all posts in the series are available here.

By CK Gunsalus, Director, National Center for Professional and Research Ethics (NCPRE), University of Illinois Urbana-Champaign

We know what it takes for institutions and scholars to produce high-quality, high-integrity research, and yet we do not always act upon that knowledge. As far back as 1988, Paul J. Friedman described both the roots of systemic shortcoming and approaches for conducting trustworthy research. Despite a clear understanding of the issues and steps that would improve our research and educational environments, the academy continues to be dogged by those same systemic issues. A recent National Academies of Sciences, Engineering and Medicine consensus study, Fostering Integrity in Research, in which I participated as a panel member, explores that same disconnect and makes recommendations. The bottom line is this: we must shift our attention and energy away from individual bad actors—though they exist and must be addressed—and toward the highly complex ecosystem within which research is conducted.

An update of an earlier appraisal published 1992, the 2017 NASEM report describes the transformation of research through advances in technology, globalization, increased interdisciplinarity, growing competition, and multiplying policy applications. It identifies six core values underlying research integrity—objectivity, openness, accountability, honesty, fairness and stewardship—and outlines best practices, including checklists, for all aspects of the research enterprise. I encourage you to read it and use these tools in your own work.

All the reports in the world won’t improve research integrity, however, if we don’t do the work in our institutions, departments, and research groups. There are many components to this effort, some of which are discussed in separate posts by my colleagues John P.A. Ioannidis and Barbara A. Spellman elsewhere in this symposium. Let’s focus here on institutional infrastructure.

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2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
June 1, 2018 8:00 AM – 5:00 PM
Wasserstein Hall, Milstein East ABC (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2018 annual conference, entitled: “Beyond Disadvantage: Disability, Law, and Bioethics.” This year’s conference is organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

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REGISTER NOW! Ordeals in Health Care: Ethics and Efficient Delivery

Ordeals in Health Care: Ethics and Efficient Delivery
May 10-11, 2018 1:00 PM
Wasserstein Hall, Milstein East (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA
 

Economic ordeals are interventions that deliberately make access to products or services more difficult in an effort to improve resource allocation. In this vein, making patients wait in long lines to schedule an appointment with a specialist might discourage patients with needs that could be met by less qualified personnel from taking up the specialist’s time, thus freeing up time for those with complex needs. Similarly, putting brand-name medications at the bottom of a long list of options on clinicians’ computers might encourage them to prescribe a generic brand listed closer to the top.

Recent research in development economics, behavioral economics, and health policy suggests that some economic ordeals could help target health resources to patients who are more likely to utilize these resources, without the regressive effects of co-pays and other forms of financial participation on the part of patients. However, making health care deliberately less accessible raises ethical challenges. Is it not the case that ordeals discourage utilization by patients with acute needs? Do these ordeals affect some disadvantaged populations disproportionately? And do deliberate obstacles to health resource utilization violate the human right to health?

This workshop will bring together leading scholars in economics, ethics, health policy, public health, medicine, sociology, and law to explore these questions.

This event is organized by Nir Eyal, PhD, Associate Professor of Global Health and Population, Harvard T. H. Chan School of Public Health, and Anders Herlitz, PhD, Visiting Scientist, Harvard T. H. Chan School of Public Health and Researcher, Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Sweden.

This event is free and open to the public, but seating is limited and registration is required. Register now!

Co-sponsored by the Harvard T.H. Chan School of Public Health; the Edmond J. Safra Center for Ethics at Harvard University; the Petrie-Flom Center for Health Law, Biotechnology, and Bioethics at Harvard Law School; the Mossavar-Rahmani Center for Business and Government at the Harvard Kennedy School of Government; and the Center for Bioethics at Harvard Medical School, with support from the Oswald DeN. Cammann Fund at Harvard University.

Register for and learn more about the event here!

Elder abuse is not substantiated

Philip C. Marshal is an elder justice advocate and founder of Beyond Brooke. The remarks below were prepared for Our Aging Brains: Decision-making, Fraud, and Undue Influence, part of the Project on Law and Applied Neuroscience at Harvard Law School; April 27, 2018. The complete version of Decision-making, fraud, and undue influence—illustrated through the lens of the Brooke Astor story was published April 28, 2018 in Medium.

The meaning of elder abuse remains misunderstood, even by professionals.

I know—from hard-learned experience—when I, and many others, worked to save my grandmother from abuse by my father.

In a December 2006 court decision, my grandmother’s guardianship judge authorized reimbursement of my legal fees for bringing a guardianship petition for my grandmother, stating, “Although this matter voluntarily settled before the hearing, I find the petitioner Philip Marshall was the prevailing party…”

But the judge also decided to award my father a portion of his legal fees, writing, “I make this ruling based on the conclusion of the court evaluator that the allegations in the petition regarding Mrs. Astor’s medical and dental care, and the other allegations of intentional elder abuse by the Marshalls, were not substantiated.” [italics added]

Decision—In the Matter of the Application of Philip Marshall for the appointment of a Guardian for the Person and Property for Brooke Astor, an Alleged Incapacitated Person. Judge John A. Stackhouse, Supreme Court of the State of New York. December 4, 2006 Continue reading

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics

2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
June 1, 2018 8:00 AM – 5:00 PM
Wasserstein Hall, Milstein East ABC (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1987).

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2018 annual conference, entitled: “Beyond Disadvantage: Disability, Law, and Bioethics.” This year’s conference is organized in collaboration with the Harvard Law School Project on Disability.

Conference Description

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

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NEW REPORT: Ethical Issues Related to the Creation of Synthetic Human Embryos

Report Summary Authored by Robert D. Truog, MD (Center for Bioethics, Harvard Medical School) and Melissa J. Lopes, JD (Harvard University Office of the Vice Provost for Research)

The Harvard Embryonic Stem Cell Research Oversight (the “ESCRO”) Committee, an ethics oversight committee charged with reviewing research protocols involving human embryos, human embryonic stem cells, and certain activities with non-embryonic human pluripotent stem cells, recently issued a report exploring the ethical issues related to the creation of synthetic human embryos.

Ethical committees such as the Harvard ESCRO occasionally receive inquiries to deliberate upon the ethical implications of emerging research technologies where there is no existing or established guidance to rely upon. Deliberating in these gray areas is not a simple task, but the Harvard ESCRO has developed a general framework for navigating this ethical terrain in real time. In these instances, the Harvard ESCRO generally consults with its peer oversight bodies, reviews data from the scientific and bioethical literature and from other scientists and ethicists in the field and, from time to time, convenes symposia to broaden the discussion around such emerging technologies.  Continue reading

TOMORROW! Our Aging Brains: Decision-making, Fraud, and Undue Influence

Our Aging Brains: Decision-making, Fraud, and Undue Influence
April 27, 2018 7:30 AM – 12:30 PM
Wasserstein Hall, Milstein East (2036)
Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

With over 70 million Baby Boomers retiring, elder financial exploitation has been labeled the “Crime of the 21st Century.” In this half-day event, we will explore the neuroscience, psychology, and legal doctrine of financial decision-making in older adults. How does the aging brain make financial decisions, and when is it uniquely susceptible? How can courts best use science to improve their adjudication of disputes over “competency”, “capacity”, and “undue influence”? Is novel neuroimaging evidence of dementia ready for courtroom use? This conference will bring together experts in medicine, science, and law to explore these important questions and chart a path forward for dementia and the law.

Part of the Project on Law and Applied Neuroscience, a collaboration between the Center for Law, Brain & Behavior at Massachusetts General Hospital and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School.

Learn more about the event here!

Insurers are making it harder for me to treat my opioid-addicted patients

By Brian Barnett, via the Washington Post

Brian Barnett is an addiction psychiatry fellow at Massachusetts General Hospital/McLean Hospital and Harvard Medical School. On February 28, 2018, he was participated in the panel discussion Addiction, Neuroscience, and the Criminal Law: Commonwealth vs. Julie Eldred” at Harvard Law School. 

I’m an addiction specialist, and my voice-mail inbox is always nearly full. Some messages are from desperate individuals looking for outpatient treatment or help finding a detoxification program. Others are from patients needing a letter confirming their treatment for a child-custody dispute or care providers informing me that my patients have been hospitalized.

It’s hard to know what to expect, but invariably one type of message awaits: voice mails from pharmacies informing me that a patient’s insurance provider will not approve payment for the medication to treat their opioid addiction unless I obtain prior authorization from the insurer.  Continue reading