Center for Medical Ethics and Health Policy

Patient & Stakeholder Views on Consent & Respect

Master
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Project Description

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This research explores the attitudes of patients and other stakeholders about different ways of being informed about research projects that compare medical treatments or procedures that are widely used. In the first phase of this research, we used Deliberative Engagement Sessions with patients and stakeholders to understand their views on three different approaches to disclosure/consent for comparative effectiveness research (CER) case studies.

In the second phase of the research, we are conducting survey experiments with patients and the public to explore their views of the acceptability of streamlined disclosure/consent procedures for a low-risk randomized CER study.

Supported By: The Patient Centered Outcomes Research Institute (PCORI)

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Project Personnel

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Principal Investigators

Ruth Faden, Ph.D., M.P.H., Co-Principal Investigator
Nancy Kass, Sc.D., Co-Principal Investigator

Co-Investigators

Stephanie Morain, Ph.D., M.P.H., Co-Investigator

Project Personnel

Kristina Hallez, Research Program Coordinator
JR Johnstone, Research Program Coordinator

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Publications

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Morain SM, Tambor E, Moloney R, Kass NE, Tunis S, Hallez K, Faden RR. Stakeholder perspectives regarding alternate approaches to informed consent for comparative effectiveness research. Learning Health Systems. 2017.

Morain SR, Whicher DM, Kass NE, Faden RR. Deliberative Engagement Methods for Patient-Centered Outcomes Research. The Patient. 2017.

Kass NE, Faden RR, Fabi R, Morain SR, et al Alternative Consent Models for Comparative Effectiveness Studies: Views of Patients from Two Institutions. AJOB Empirical Bioethics 2016.

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Presentations

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“Streamlining Informed Consent for Patient-Centered Outcomes Research: Empirical Findings.” PCORI Annual Meeting. National Harbor, MD. 2016

“Testing Methods to Modify the Consent Process.” PRIM&R Advancing Ethical Research Conference. San Antonio, TX. 2017

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