Collaboration and Outside-the-Box Thinking to Overcome Training-Related Challenges for Including Patient Stakeholders as Data Collectors in a Patient-Engaged Research Project

Abstract

Including patient stakeholders as active members of the research team is essential to a patient-engaged research design. To hire community-based research staff for a study comparing the effectiveness of diabetes self-management programs for Latinos, we had to provide phlebotomy training which was not allowed under the fiscal guidelines of our funders. By collaborating with partners at the Clinical and Translational Science Center, we were not only able to find a creative solution and provide phlebotomy training to our research staff but the process of creating the training also contributed to improved infrastructure for patient-engaged research at our institution.

A patient-centered comparative effectiveness research study of culturally appropriate options for diabetes self-management

“…Patient stakeholders participated in all aspects of the research. The community co-principal investigator (Co-PI), the project coordinator, the primary research site director, the research manager, and three data collectors were from the population of study [31, 34]. We convened a 10-member Patient Advisory Board (PAB) of patients, individuals who provide care or social support to a person(s) with diabetes (hereafter, “social supports”), and researchers.…”

“…We used a community-engaged research approach with the engagement of, and participation by, diverse patient stakeholders, including Latinx diabetes patients and their social supports, Latinx community health workers (CHWs), Latinx diabetes educators [31][32][33][34], and partner community agencies serving Latinx clients. A patient advisory board identified the research question and contributed to the design and implementation of the study.…”

Community–University Health Research Partnerships

“…Similarly, budget items that would make community participation in research feasible (such as explicit and equitable compensation for community organisations as research partners or as research sites) or that would support community engagement processes (such as food for community meetings, trainings for community members [Page-Reeves et al 2017a], or professional-level stipends for community advisors, mentors or partners) are o en prohibited by funders' fi scal guidelines. Without adequate and realistic fi nancial supports, community-engaged research becomes more challenging or even impossible.…”

Exploring how patients, carers and members of the public are recruited to advisory boards, groups and panels as partners in public and patient involved health research: a scoping review protocol

“…PPI is supported by participatory processes that aim to ‘address community issues in a collaborative, consultative, democratic, reflective, reflexive, dialogical and improvement-oriented fashion that builds capacity and creates actionable, ownership of findings’ 2. This in turn can increase the application and dissemination of research findings, by increasing the relevance and impact of research for those who stand to benefit from its findings 2–6. Specifically, patients, carers and public stakeholders contribute experiential knowledge, unique perspectives and skills that are essential when designing, implementing and disseminating health research 4.…”

“…This in turn can increase the application and dissemination of research findings, by increasing the relevance and impact of research for those who stand to benefit from its findings 2–6. Specifically, patients, carers and public stakeholders contribute experiential knowledge, unique perspectives and skills that are essential when designing, implementing and disseminating health research 4. Thus, it is recommended that patients, carers and members of the public are meaningfully engaged in research at the earliest stage, ideally the conception of the study 7…”