June 2016

Making a Difference Grantees, Spring 2016

We are pleased to announce the Spring 2016 Making a Difference awards

Scott Halpern, MD (University of Pennsylvania)
2 years / $115,927

The Ethical Acceptability of Deception in Physician-Patient Communication

Medical decision-making requires physicians and patients to use information about future outcomes to make choices. Physicians may use deception with the goal of protecting patients from emotional distress, although ethicists argue that this threatens patient autonomy and conflicts with physicians’ duty of truthfulness. This project will compare patients’, surrogate decision makers’, and physicians’ evaluations of deception by physicians, describe their desires to communicate using deception, and identify characteristics that are associated with their views of deception. The findings will directly respond to the bioethical debate using empirical data and will be used to improve patient-physician communication.

Nancy E. Kass, ScD (Johns Hopkins University)
2 years / $384,479

Improving Understanding of Clinical Research Studies: An Experimental Study to Compare Two Simple Informed Consent Strategies to Traditional Informed Consent in the Context of Ongoing, Real Clinical Studies

Informed Consent remains too long and complex. Proposed changes to federal regulations-and bioethics literature-suggest consent forms should be shorter and simpler, yet simple, adaptable, evidence-based approaches are unavailable. Bioethics and research oversight leaders will collaborate to test two simplified, easily reproducible consent approaches-a bulleted fact sheet and a video interview between a Principal Investigator and patient. Both emphasize key information, in discrete chunks, using lay language. Patients considering enrollment in any of five ongoing Johns Hopkins University clinical studies will be randomized to one of these simplified approaches or standard consent to see which achieves better understanding and/or satisfaction.