Willingness to Participate (W2P) Pilot Program Awardees
The Willingness to Participate (W2P) Pilot awards will support research on how people choose to participate in research. The aim of the awards is to support projects that help increase understanding of research receptivity and engagement of the general public or specific populations, as well as to projects that test solutions to increase receptivity and engagement.
Adults Impacted by the Carceral System
Team: Emily F. Dauria, PhD, MPH (PI), Richard Garland, MSW (CO-I)
Abstract: Over 20 million Americans are currently or have been incarcerated, 12 million cycle in-and-out of jails annually, and 1 in 55 Americans is currently under community supervision (i.e., on probation or parole). Individuals involved in the carceral system are disproportionately from racial and ethnic minority groups and have higher rates of chronic and acute health conditions than their counterparts in the general population. Despite these alarming disparities, representation of this group in clinical research is limited (e.g., < 0.1% of National Institutes of Health funded research in 2015). There are, however, emergent federal efforts to increase research support to examine health disparities among this population. As a multidisciplinary team with lived experience in the carceral system, and expertise in health disparities, community-engaged research, peer-led programming, intervention development, and the carceral system, the proposed study aims to develop an intervention directed at improving access to and engagement in clinical research for individuals involved or affected by the carceral system via a Peer Research Assistant program. Peer Research Assistants (PRAs) are individuals recruited from the community, trained in research methodologies, and offered pathways to employment by being hired as active members of clinical research teams. This model can improve the effectiveness, relevance, and acceptability of research studies by ensuring the questions, approaches, and mediums of dissemination are appropriate.
Non-English Speaking Communities in Research
$25,000 Awardee & Recipient of $5,000 Community Engagement Bonus Award
Team: Maya Ragavan, MD, MPH, MS (PI), Jaime Sidani, PhD (CO-PI)
Abstract: Non-English-speaking communities (NES; defined as those who speak and understand English less than very well) are growing in Allegheny County and nationwide. Language barriers are shown to decrease participation in research. A lack of diversity in research participation leads to results that are less generalizable and trusted, and further perpetuates health disparities among NES communities. Our goal is to examine how to increase accessibility, recruitment, and trustworthiness of research studies for NES communities in Allegheny County and the surrounding area. In Aim 1, we will interview both NES community leaders and community members to explore the perspectives of NES communities regarding research accessibility and trustworthiness. Informed by Aim 1 results, in Aim 2a, we will co-create and distribute a survey for researchers to examine barriers and facilitators to inclusion of NES communities in research. Next, in Aim 2b we will conduct dyadic interviews with researchers who participated in the survey to develop strategies to address the previously identified barriers. This study fills a unique gap in the current literature by examining the specific experiences NES communities have faced when participating in research as well as elucidating researcher perspectives on building trustworthiness, particularly with NES communities. Results from this study can inform NES inclusion practices at the University of Pittsburgh and will additionally serve as preliminary data for proposals to the National Institute of Minority Health and Health Disparities (NIMHD) to develop and evaluate a community co-created toolkit for researchers on best practices for equitable inclusion of NES communities in research.
Pacific Islander Participation in Genomic Research
$25,000 Awardee & Recipient of $5,000 Community Engagement Bonus Award
Team: Ryan Minster, PhD (PI), Andrea Durst, DrPH, MS (CO-PI)
Abstract: Rapid advances in human genome research continue to be translated into real benefits for prevention and treatment of disease. The overwhelming majority of genomic-based studies, however, have focused on individuals of European ancestries, resulting in a diversity crisis in genomic research. The exclusion of minority groups—particularly those at high risk for poor health—is a critical gap as it precludes advancement of precision medicine and development of best practices in clinical care for all individuals, regardless of racial identity or ethnic background. Despite the strong potential to advance both scientific knowledge and genomic justice, populations of non–European ancestries are often hesitant to participate in genomic-based research. While barriers to building trust, reciprocity, and partnerships with historically excluded groups are beginning to be examined, there has been little work in this space with Pacific Islanders. Therefore, the purpose of this proposal is to understand the specific barriers to and facilitators of participant recruitment and retention in genomic-based research and to identify solutions to increase receptivity and engagement, focusing specifically on Pacific Islander individuals who reside in the U.S. and U.S.-Affiliated Pacific Islands.
Surrogates Reasoning to Decline Trial Consent
Team Members: Alexis Steinberg, MD (PI), Jonathan Elmer, MD (CO-PI)
Abstract: Obtaining informed consent in trials of acute catastrophic illness is challenging. Barriers include limited time, emotional distress, and uncertainty of a patient’s wishes regarding research. We focus on the specific example of cardiac arrest. UPMC Presbyterian participates in the Influence of Cooling duration on Efficacy in Cardiac Arrest Patients (ICECAP) study. ICECAP randomizes comatose post-arrest patients to one of several durations of temperature control. Consent for ICECAP occurs within six hours of active cooling and may be obtained face-to-face or remotely. We will explore barriers and facilitators to consent for ICECAP. We will use purposive sampling of surrogates to recruit pilot participants who both consented to and declined ICECAP after in-person or remote discussion. We will perform semi-structured interviews of 40 surrogate-provider dyads and use inductive and deductive coding methods for thematic analysis. We will compare results between surrogates who consented and those who declined ICECAP participation (Aim 1) and between surrogates approached in-person or remotely (Aim 2). Our research team has clinical expertise in neurocritical care, experience obtaining emergency informed consent and in rigorous qualitative methods. Our pilot findings will support design and development of a competitive NIH award to expand our research across a multicenter cohort of Strategies to Innovate Emergency Care Clinical Trials Network (SIREN) trial sites including studies of adult and pediatric cardiac arrest and traumatic brain injury. Ultimately, our goal is to develop and refine strategies to improve volume and equity of recruitment for other future neurological emergency trials.