2017 Petrie-Flom Center Annual Conference: Transparency in Health and Health Care: Legal and Ethical Possibilities and Limits
The call for abstracts is now closed. We will announce the full conference agenda early in 2017.
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2017 annual conference, entitled: “Transparency in Health and Health Care: Legal and Ethical Possibilities and Limits.”
Transparency is a relatively new concept to the world of health and health care, considering that just a few short decades ago we were still in the throes of a “doctor-knows-best” model. Today, however, transparency is found on almost every short list of solutions to a variety of health policy problems, ranging from conflicts of interest to rising drug costs to promoting efficient use of health care resources, and more. Doctors are now expected to be transparent about patient diagnoses and treatment options, hospitals are expected to be transparent about error rates, insurers about policy limitations, companies about prices, researchers about data, and policymakers about priorities and rationales for health policy intervention. But a number of important legal and ethical questions remain. For example, what exactly does transparency mean in the context of health, who has a responsibility to be transparent and to whom, what legal mechanisms are there to promote transparency, and what legal protections are needed for things like privacy, intellectual property, and the like? More specifically, when can transparency improve health and health care, and when is it likely to be nothing more than platitude?
This conference, and anticipated edited volume, will aim to: (1) identify the various thematic roles transparency has been called on to play in American health policy, and why it has emerged in these spaces; (2) understand when, where, how, and why transparency may be a useful policy tool in relation to health and health care, what it can realistically be expected to achieve, and when it is unlikely to be successful, including limits on how patients and consumers utilize information even when we have transparency; (3) assess the legal and ethical issues raised by transparency in health and health care, including obstacles and opportunities; (4) learn from comparative examples of transparency, both in other sectors and outside the United States. In sum, we hope to reach better understandings of this health policy buzzword so that transparency can be utilized as a solution to pressing health policy issues where appropriate, while recognizing its true limitations.
Call for Abstracts - CLOSED
We welcomed submissions on both the broad conceptual questions described above and more specific policy issues, including:
Patient access to medical records (including comprehensive electronic health records that span providers and institutions)
Transparency of medical bills and billing practices from institutions and insurers
Transparency in drug pricing (especially in light of legislative proposals seeking information regarding how companies set prices)
Conflict of interest disclosure and management (among clinicians, researchers, health agency advisory committees, etc.)
“Report cards,” online reviews, and other rating systems for health care institutions and providers (including accuracy, metrics, and utility)
Medical error and apology laws
Proper scope of informed consent disclosures in clinical care and research (e.g., provider characteristics, cost, available data, etc.)
Data sharing in clinical care and research (aggregate/individual, identified/de-identified; for purposes of replication, identification of trends, public health, national security, etc.)
Return of results to clinical trial participants
Mechanisms to facilitate patient and consumer understanding, use, and engagement with the information disclosed
HIPAA and similar laws as facilitators or inhibitors of transparency
Potential implications of transparency for discrimination
Food and drug labeling (and other consumer-focused disclosures)
Public health disclosures (e.g., lead in water and exposure to other environmental toxins)
New approaches to transparency not yet attempted in health policy contexts
Please note that this list is not meant to be exhaustive; we hope to receive abstracts related to the conference’s general theme even if a particular topic was not specifically listed here. However, proposals that lack a clear linkage to all three aspects of the conference – health/health care, transparency, and either law or ethics will not be considered. Papers that focus on ethics should include substantial discussion of policy implications. Relatedly, law will be treated broadly to include governmental policy decisions more generally. Successful abstracts will propose or outline an argument/position, rather than merely stating a topic.
In an effort to encourage interdisciplinary and international dialogue, we welcome submissions from legal scholars and lawyers, of course, but also from bioethicists, philosophers, clinicians, medical researchers, public health practitioners, behavioral economists, government officials and staff, international scholars and regulators discussing how their systems have handled these issues in ways that the US may learn from, and others who have a meaningful contribution to make on this topic. We welcome submissions from advocacy organizations, think tanks, and others outside academia, but emphasize that this is a scholarly conference, and abstracts/papers will be held to academic standards of argumentation and support.
The call for abstracts is now closed.
Additional information on the conference, including registration information and the agenda, will be posted here as it becomes available.
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Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the Center for Bioethics at Harvard Medical School, with support from the Oswald DeN. Cammann Fund.
bioethics biotechnology clinical research doctor-patient relationship fda food health care finance health care reform health information technology health law policy human subjects research insurance pharmaceuticals privacy public health research