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April 28, 2017

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Couldn't attend in person? You can still check out the conversation on Twitter: @PetrieFlom #transparencyinhealth!

And check out many of the speakers' slide presentations below!

Description

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 aimed 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 sought to reach better understandings of this health policy buzzword so that, while recognizing its true limitations, transparency can be utilized as a solution to pressing health policy issues.

Agenda

8:00 – 8:45am, Registration

8:45 – 8:50am, Welcome Remarks

  • I. Glenn Cohen, Professor of Law and Faculty Director, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School

  • Holly Fernandez Lynch, Executive Director, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School and Faculty, Center for Bioethics, Harvard Medical School

8:50 – 9:55am, Transparency in Health and Health Care: Thematic Issues

  • Barry Furrow, Drexel University Thomas R. Kline School of Law - Smashing into Windows: The Limits of Consumer Sovereignty in Health Care

  • Govind Persad, Johns Hopkins Berman Institute of Bioethics and School of Public Health - Transparency Trade-Offs: Priority-Setting, Scarcity, and Health Fairness

  • Oliver Kim, Cross-Border Health Foundation - Slightly Hazy: The Ethical, Legal, and Policy Problems with Transparency and Too Much Information

  • Moderator: Abigail R. Moncrieff, Visiting Associate Professor of Law, Harvard University; Associate Professor of Law and Peter Paul Career Development Professor, Boston University School of Law

9:55 – 10:10am, Break

10:10 – 11:10am, Transparency and Informed Consent

  • Craig Konnoth, University of Pennsylvania Law School and NYU School of Medicine - Transparency, Informed Consent, and the Consumer-Patient Paradigms

  • Rich Saver, UNC School of Law, School of Medicine, and School of Public Health - Financial Conflicts of Interest and Transparency Regulation: Implications of the Sunshine Act’s Mixed Record

  • Elizabeth Sepper, Washington University School of Law - Disclosure As Remedy for Religious Refusal: Evaluating the Substance, Process, and Efficacy of Transparency for Religious Restrictions on Care

  • Moderator: Luke Gelinas, Petrie-Flom Center/Harvard Catalyst Fellow in Clinical Research Ethics

11:10am – 12:10pm, Transparency and Economics: Health Care Costs and Billing

  • Ameet Sarpatwari, Harvard Medical School and Brigham and Women's Hospital (with Jerry Avorn and Aaron S. Kesselheim) - Transparency on Prescription Drug Expenditures: A Lever for Restraining Pricing?

  • Marc Rodwin, Suffolk University Law School - Pharmaceutical Price Transparency and Consumer Choice: An Empirical Test and Conceptual Choice

  • Wendy Netter Epstein, DePaul College of Law - Price Transparency and Incomplete Contracts in Health Care

  • Moderator: Kristin Madison, Northeastern University School of Law

12:10 – 1:00pm, Lunch

1:00 – 2:00pm, Transparency and Innovation

  • Stefano Marino, European Medicines Agency (with Spyridon Drosos) - The European Medicines Agency’s Approach to Transparency

  • Barbara Bierer, Harvard Catalyst | the Harvard Clinical and Translational Science Center and the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (with Mark Barnes and Rebecca Li) - Transparency and Clinical Trial Data Sharing: Legal and Policy Issues

  • Thomas J. Hwang, Brigham and Women's Hospital (with Rachel E. Sachs) - Increasing FDA Transparency As Enhancing the Innovation Process (Q&A video only)

  • Moderator: Holly Fernandez Lynch, Petrie-Flom Center, Harvard Law School and Center for Bioethics, Harvard Medical School

2:00 – 3:20pm, Transparency and Outcomes: Promoting Health and Safety

  • Anthony Orlando, University of Southern California and California State University, Los Angeles (with Arnold Rosoff) - The Role of Transparency in Promoting Healthy Behaviors: Pros, Cons and Perils of Information-Sharing to Foster Personal Responsibility in Health Care

  • Sharona Hoffman, Case Western Reserve University School of Law - Personal Health Records As a Tool for Transparency in Health Care

  • Jim Hawkins, University of Houston Law Center (with Barbara J. Evans and Harlan Krumholz) - Nontransparency in Electronic Health Record Systems

  • Dov Fox, University of San Diego School of Law -“Never Events” in Reproductive Health Care

  • Moderator: Gregory Curfman, Harvard Health Publications

3:20 – 3:35pm, Break

3:35 – 4:55pm, Challenges in Promoting and Measuring Transparency in Health Care

  • Erin Fuse Brown, Georgia State University College of Law (with Jaime King​) - ERISA As a Barrier for State Health Care Transparency Efforts

  • Jennifer E. Miller, NYU School of Medicine - Clinical Trial Transparency: Definitions, Benchmarks, and Reform Efforts

  • Holly Fernandez Lynch, Petrie-Flom Center, Harvard Law School and Center for Bioethics, Harvard Medical School - Transparency in IRB Decision-Making

  • David Hyman, Georgetown Law - Using Disclosure to Regulate Pharmacy Benefit Managers: The Dark Side of Transparency

  • Moderator: I. Glenn Cohen, Petrie-Flom Center, Harvard Law School

4:55 – 5:00pm, Closing Remarks

Learn More!

Slide Presentations

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.


Videos

VIDEO: Welcome Remarks, I. Glenn Cohen and Holly Fernandez Lynch

VIDEO: Panel 1, Barry Furrow, "Smashing into Windows: The Limits of Consumer Sovereignty in Health Care"

VIDEO: Panel 1, Govind Persad, "Transparency Trade-Offs: Priority-Setting, Scarcity, and Health Fairness"

VIDEO: Panel 1, Oliver Kim, "Slightly Hazy: The Ethical, Legal, and Policy Problems with Transparency and Too Much Information"

VIDEO: Panel 1, Audience Q & A

VIDEO: Panel 2, Craig Konnoth, "Transparency, Informed Consent, and the Consumer-Patient Paradigms"

VIDEO: Panel 2, Rich Saver, "Financial Conflicts of Interest and Transparency Regulation: Implications of the Sunshine Act’s Mixed Record"

VIDEO: Panel 2, Elizabeth Sepper, "Disclosure As Remedy for Religious Refusal: Evaluating the Substance, Process, and Efficacy of Transparency for Religious Restrictions on Care"

VIDEO: Panel 2, Audience Q & A

VIDEO: Panel 3, Ameet Sarpatwari, "Transparency on Prescription Drug Expenditures: A Lever for Restraining Pricing?"

VIDEO: Panel 3, Marc Rodwin, "Pharmaceutical Price Transparency and Consumer Choice: An Empirical Test and Conceptual Choice"

VIDEO: Panel 3, Wendy Netter Epstein, "Price Transparency and Incomplete Contracts in Health Care"

VIDEO: Panel 3, Audience Q & A

VIDEO: Panel 4, Stefano Marino, "The European Medicines Agency’s Approach to Transparency"

VIDEO: Panel 4, Barbara Bierer, "Transparency and Clinical Trial Data Sharing: Legal and Policy Issues"

VIDEO: Panel 4, Audience Q & A

VIDEO: Panel 5, Anthony Orlando, "The Role of Transparency in Promoting Healthy Behaviors: Pros, Cons and Perils of Information-Sharing to Foster Personal Responsibility in Health Care"

VIDEO: Panel 5, Sharona Hoffman, "Personal Health Records As a Tool for Transparency in Health Care"

VIDEO: Panel 5, Jim Hawkins, "Nontransparency in Electronic Health Record Systems"

VIDEO: Panel 5, Dov Fox, “'Never Events' in Reproductive Health Care"

VIDEO: Panel 5, Audience Q & A

VIDEO: Panel 6, Erin Fuse Brown, "ERISA As a Barrier for State Health Care Transparency Efforts"

VIDEO: Panel 6, Jennifer E. Miller, "Clinical Trial Transparency: Definitions, Benchmarks, and Reform Efforts"

VIDEO: Panel 6, Holly Fernandez Lynch, "Transparency in IRB Decision-Making"

VIDEO: Panel 6, David Hyman, "Using Disclosure to Regulate Pharmacy Benefit Managers: The Dark Side of Transparency"

VIDEO: Panel 6, Audience Q & A

VIDEO: Closing Remarks, I. Glenn Cohen and Holly Fernandez Lynch

Tags

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   public health   research