The Health Research Engagement Intervention (HREI) aims to reduce information and access disparities for breast cancer research opportunities among low-socioeconomic status (SES) and limited English proficient (LEP) breast cancer survivors by providing neutral, non-trial-specific information about health research via a trusted patient navigator. Qualitative methods in the context of a community-based participatory research design were used to iteratively design the HREI in collaboration with community-based care navigators from a trusted community organization, Shanti Project, and to locate appropriate research studies in collaboration with a web-based trial-matching service, BreastCancerTrials.org (BCT). Navigators were first trained in clinical trials and health research and then to deliver the HREI, providing feedback that was incorporated into both the HREI design and BCT's interface. Our intervention pilot with low SES and LEP survivors (n = 12) demonstrated interest in learning about "health research." All 12 participants opted to obtain more information when offered the opportunity. Post-intervention questionnaires showed that three of 11 (27 %) participants independently pursued additional information about research opportunities either online or by phone in the week following the intervention. Post-intervention navigator questionnaires indicated that navigators could confidently and efficiently deliver the intervention. LEP patients who pursued information independently faced language barriers. The HREI is a promising and potentially scalable intervention to increase access to neutral information about breast cancer research opportunities for low-SES and LEP individuals. However, in order for it to be effective, systems barriers to participation such as language accessibility at sources of health research information must be addressed.

Objective

Evaluate a community-based navigator intervention to increase breast cancer patients' and survivors' access to information about health research participation opportunities.

Methods

In the context of a Community Based Participatory Research collaboration, we conducted a prospective randomized controlled trial of the Health Research Engagement Intervention with pre- and post-intervention surveys (n = 133). The primary outcome was health research information-seeking behavior. Secondary outcomes were health research knowledge, willingness to participate in health research, and health empowerment. Qualitative interviews (n = 11) elucidated participant perspectives on the intervention.

Results

There was no statistically significant difference between intervention and control groups' information-seeking behavior. Knowledge that not all health research studies are about drugs or treatments increased significantly from pre- to post-test among intervention group participants (32% to 48%, p = 0.012), but not in the control group (43% to 30%, p = 0.059); the difference between arms was statistically significant (p = 0.0012). Although survey responses indicated willingness to participate, qualitative interviews identified competing priorities that limited participants' motivation to seek enrollment information.

Conclusions and practice implications

Community-based navigators are a trusted, and therefore promising link between health research and low-income underserved communities. However, systemic barriers in health research infrastructures need to be addressed to include low income, LEP and immigrant populations.