A research team at The Hastings Center has been approved for $1.5 million in funding by the Patient-Centered Outcomes Research Institute (PCORI) to study organizational trustworthiness as it relates to community-engaged research. Led by Virginia A. Brown, PhD, a research scholar at The Hastings Center, the study will be the first to investigate the role of organizational trustworthiness in shaping research engagement processes and outcomes.

Measures to assess organizational trustworthiness as it relates to research are lacking. This study will develop a measure and conduct a preliminary test of it. The study aims to:

Understand the perspectives of diverse patients and other partners (e.g., clinicians, researchers, community-based organizations) regarding organizational trustworthiness as it relates to research and how these perspectives have shaped interpersonal trust to improve engagement in research.

Develop and assess a new measure of organizational trustworthiness.

Examine the observable properties of organizational trustworthiness that the new measure identifies. To do this, the researchers will recruit 1,035 patients and others from past or currently funded PCORI engagement and research projects, PCORnet, and other community-engaged research projects to complete an online survey based on findings from the above two aims.

Dr. Brown’s study was selected through a PCORI Funding Announcement focused on building an evidence base to support development of measures and approaches that strengthen meaningful engagement in comparative clinical effectiveness research. Much has been learned in recent years about participatory research that seeks to involve the ultimate end users of study results, including patients, caregivers, clinicians, and others, as partners in the research process. But there has been little systematic study about which engagement techniques are most effective.

“This study was selected for PCORI funding for its potential to strengthen patient-centered and stakeholder-driven comparative clinical effectiveness research by providing evidence about specific engagement methods and measures that promote representative engagement of patients and other stakeholders in research,” said PCORI Executive Director Nakela L. Cook, MD, MPH. “We look forward to following the study’s progress and working with The Hastings Center to share the results.”   

The Hastings Center’s award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract. 

PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed health care decisions.

The Hastings Center is a nonprofit, nonpartisan bioethics research institute.

Research Team:

Lead PI:

Virginia A. Brown, PhD, research scholar, The Hastings Center

Co-PI:

Phillip W. Schnarrs, PhD, incoming professor in the Department of Behavioral and Community Health Sciences and co-director of the Center for LGBT Health at the University of Pittsburgh School of Public Health 

Co-Investigators:

Nancy Berlinger, PhD, senior research scholar, The Hastings Center

Michael K Gusmano, PhD, professor of health policy, College of Health, Lehigh University

John Oeffinger, director of eLearning and Training, Texas Health Institute 

AI Richmond, MSW, executive director, Community-Campus Partnerships for Health

Lauren Taylor, PhD, assistant professor, Department of Population Health, NYU Grossman School of Medicine

Andrew Yockey, PhD, assistant professor of public health, The University of Mississippi

Consultant

John Hughes, PhD, associate professor, Department of Community and Population Health, Lehigh University

  To interview Virginia A. Brown, contact:

Susan Gilbert

Communications Director

The Hastings Center

gilberts@thehastingscenter.org

845.424.4040 x244