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
We welcome 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.
How to Participate
If you are interested in participating, please send a 1-page abstract of the paper you would plan to present to email@example.com as soon as possible, but not later than December 2, 2016. If your abstract is selected, your final paper will be due on March 31, 2017, and you will be assigned a presentation slot for the conference. Please note that all presenters must provide a full final draft in order to participate and that presenters are expected to attend the conference for its full duration. The conference will be held on Friday, April 28, 2017. We will pay travel expenses for presenters who must travel to Cambridge; co-authored papers must name a single presenter.
In the past, we have successfully turned several of our conferences into edited volumes (e.g., with Cambridge, MIT, Johns Hopkins, and Columbia University presses). If such a volume arises out of this conference, our expectation is that conference presenters will publish their papers with us as part of the edited volume. We will accept conference papers of all lengths and styles (e.g., law review, medical, philosophy, or policy journal, etc.), but presentations will be limited to about 15 minutes and chapters in conference volumes are generally limited to about 5,000 words, including references. Previous conference participants have been able to publish their submissions in different formats in multiple venues, for example both as a short book chapter and a longer law review article. However, the version that will be used for our edited volume should not have been published previously or be planned to publish separately.