June 2019

Making a Difference Grantees, Spring 2019

We are pleased to announce the Spring 2019 Making a Difference awards.

Farr Curlin MD (Duke University)
2 years / $216,629

Toward Effective Cooperation between Clinical and Other Community Stakeholders Committed to Stemming the Opioid Epidemic

What stands in the way of cooperation between clinicians and community stakeholders responding to the opioid epidemic, and how can these obstacles be overcome? This project has two aims: first, to describe the barriers to institutional collaboration among those responding to the opioid epidemic; and second, to create policy recommendations for effective collaboration in efforts to stem the opioid epidemic. In partnership with a consortium in southern Appalachia, the project will offer practical resources for clinicians and communities struggling with the opioid epidemic across the nation.

Rachel Jimenez MD (Massachusetts General Hospital)
18 months / $234,150

Oncologists’ Views on the Ethics of Patient Recorded Visits

In an era of accessible technology and transparency, oncology patients increasingly want the opportunity to record encounters with their oncologist. There are several potential benefits to this practice, but there are also potential harms that can complicate the relationship between patient and physician. The research team will first survey oncologists’ current beliefs, experiences, and practices regarding patient-initiated recording of visits and then, with the input of a team of multidisciplinary stakeholders, develop a comprehensive white paper on the ethics of this practice.

Michelle Mello JD, PhD (Stanford University)
18 months / $263,569

Ethical and Policy Issues for University Data Sharing in the Age of Big Data

This project will map the ethical and policy dilemmas arising from data sharing between universities and technology companies. Data exchanges often evade oversight because the data do not include direct personal identifiers, but today, computing techniques allow such data to be linked back to individuals. Consumers may have little understanding that their data may be given to others for analysis. This project will make recommendations about policies and practices that universities and companies can adopt to ensure that data sharing comports with shared norms about privacy and informed consent.

Eric G. Campbell PhD (University of Colorado)
18 months / $301,257

A Novel Methodology to Explore Bioethics Issues in Physician Aid-in-Dying

Physician aid-in-dying (PAD) is a highly contentious issue in bioethics and health policy today. Data on physicians’ experiences and assessment of key bioethical issues in PAD derive from small, qualitative studies rather than from quantitative studies due to high costs of large physician surveys and concerns about anonymity. We aim to develop and test a novel efficient, low cost, anonymous methodology to facilitate bioethics-related physician surveys. This study will result in generalizable findings that bring bioethics into policy and decision-making processes about PAD.

Rita F. Redberg MD (University of California San Francisco)
2 years / $280,000

Technologies Approved with Incomplete Evidence

Legislative and regulatory changes are allowing drugs, medical devices, and digital health technologies to gain approval based on low-quality evidence. The resulting uncertainty about risks and benefits for medical products may compromise bioethical principles including autonomy and non-maleficence. The team will assess if and how physicians convey this uncertainty to patients. A modified Delphi panel will identify consensus solutions to enhance patient protection and inform a regulatory framework that reconciles ethical principles with the need to generate new knowledge to inform care for patients.

Tristan McIntosh PhD (Washington University)
2 years / $247,010

Helping State Medical Boards Effectively Protect Patients by Identifying and Promulgating Promising Practices and Essential Resources

It is unclear why State Medical Boards (SMBs) sometimes fail to remove misbehaving physicians from practice in a timely manner or what would make SMBs more effective in protecting patients. This project has two aims: 1) obtain expert consensus on promising practices and essential resources needed to protect the public when physicians are accused of serious ethical violations, and barriers to adopting these practices; and 2) review existing state laws governing SMBs, develop an inventory of statutory provisions that align with effective practices, and draft recommendations for statutory language.