Investigating Medically Underserved Populations’ attitudes, perceptions, and use of genomic testing

Precision medicine initiatives are growing exponentially in medical care systems. Genetic testing for both somatic and germline testing have allowed providers to provide both tailored preventative and treatment plans for patients related to various disease conditions. Medically underserved populations (those experiencing health disparities) are largely interested in testing even with having limited knowledge of testing. Still, many of the interventions and research efforts to improve these disparities have solely focused on individuals’ attitudes and knowledge of testing.

Based upon findings in my predoctoral research (F99 phase), intervention efforts may be more successful at addressing testing disparities at the interpersonal and system levels via agency and normative influence. Thus, the goal of the K00 proposal is to better characterize environmental, interpersonal, and institutional facilitators and barriers that impact genetic testing utilization especially at the clinical level within the implementation of novel service delivery approaches, while also developing strategic partnerships with local genetic providers and community partners their current communication strategies and work to develop materials and communication campaigns to promote genomic engagement with medically underserved populations and testing their efficacy with panel data. Aim 1 seeks to characterize clinical facilitators and barriers for novel innovative genetic testing service delivery approaches among a) providers and b) all eligible patients to develop impactful interventions to improve perceived agency for genetic testing uptake. Using a sequential qualitative and quantitative approach, I will interview both community practice providers (n=15, Aim 1a) and patients (n=20, Aim 1b) engaged with the Telegenetics program to better understand rationale of ordering testing, experiences, and affective responses, and then develop and distribute a survey for both providers (n=100) and patients (n=200) to test associations between uptake and facilitators and barriers.

Aim 2 will build strategic local partnerships with genetic testing service providers as to a) assess current engagement strategies and developed engagement strategies for medically underserved populations and b) test messages that emphasize normative influence and agency on testing intention. The first phase of Aim 2 will assess Penn’s Telegenetics program, the Basser Center BRCA program, and Abramson Cancer Center Community Outreach and Engagement arm communication and engagement strategies around cancer genetic testing service delivery, using a formative, process, and outcome communication evaluation (Aim 2a). Next, building upon connections made in Aim 2a, I plan to work with community leaders through a community participatory research model and asset mapping approach to co-create materials and test their effects with a Qualtrics panel (n=500 participants, Aim 2b). Subsequently with lessons learned, I argue some of these strategies could be scaled to national partners and other healthcare systems to promote genetic testing service delivery with a variety of other medically underserved communities.

Grant Number: 5K00HG012487-04
NIH Institute/Center: NIH
Principal Investigator: Daniel Chavez-Yenter