Patient engagement in type 2 diabetes mellitus research: what patients want

Kristina F Simacek,1 Tanya Nelson,2 Mignon Miller-Baldi,3 Susan C Bolge2 1PatientsLikeMe, Cambridge, MA, USA; 2Janssen Scientific Affairs, LLC, Raritan, NJ, USA; 3Janssen Medical Information Center, Titusville, NJ, USA Background: As patients are the ultimate stakeholder in their health, their perspectives should be included along with researchers, providers, and funders of research design, execution, and interpretation. Despite the high prevalence of type 2 diabetes mellitus (T2DM), patients are rarely directly included in these decisions. Purpose: We sought to determine areas of research most important to patients with T2DM, identify ways through which patients with T2DM want to engage in research, and evaluate online patient research networks as a source for obtaining patient perspectives on research engagement. Patients and methods: This study used an online patient community forum (PatientsLikeMe) to host two asynchronous moderated discussions, each with three to four prompted discussion posts. A qualitative summary of themes was derived from the posts. Results: Eighty-eight participants with T2DM took part. Participants were mostly white (86%), averaged 58.6 years of age, half were female (50%), and over half (62%) resided in the US. Research priorities included managing T2DM with comorbidities, controlling blood sugar levels, finding a cure, and understanding causes of T2DM. Participants wanted to see direct applications of research to their lives. Clinical research was perceived to have overly restrictive eligibility criteria and to measure outcome sets that do not adequately address patient health concerns. Participants indicated broad interest in partnering in research and a willingness to apply their skills and educational background to specific stages in the research process. Conclusion: Patients with T2DM would like researchers to address outcomes that have meaning in patients’ daily lives. Initiatives to involve patients in research should leverage and enable patients to contribute as participants, advisors, or co-investigators, going beyond research topic prioritization to full participation throughout the research process based on their abilities and interest. This study provides support for the use of online patient research network discussions to generate rich qualitative data to engage patients in research. Keywords: qualitative research, patient engagement, patient involvement, research priorities, diabetes mellitus, social networking, social media