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

Abstract

BackgroundAs 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.PurposeWe 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 methodsThis 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.ResultsEighty-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.ConclusionPatients 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.

Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities

“…However, using the PFAC model is only one approach. Other opportunities exist that may allow for greater outreach and an increase in the diversity of engaged stakeholders, without necessarily requiring in‐person meetings: for instance, the use of e‐advisors and online communities such as the “Patients Like Me” collaborative that has informed type II diabetes research …”

What Are Diabetes Patients Versus Health Care Personnel Discussing on Social Media?

“…13 Another study carried out in a closed online community also reported diabetes management as one of the main interests of individuals affected with type 2 diabetes. 31 In this new study, the proportion of posts on self-management in the same closed patient group reached 85%. Interestingly, in both studies, the posts on self-management also had the highest average number of comments.…”

Goals of cure: Perspectives on the concept of cure in type 2 diabetes

“…A survey distributed to T2D patients found that the highest priority question is: ‘Can T2D be cured or reversed, what is the best way to achieve this and is there a point beyond which the condition cannot be reversed?’ 15 . Furthermore, patients most want to see T2D research conducted towards ‘managing T2D with comorbidities, controlling blood sugar levels, finding a cure and understanding causes of T2D’ 16 . When T2D patients were interviewed after a weight loss intervention study, 17 four themes emerged to form a patient narrative of cure for T2D.…”

“… 15 Furthermore, patients most want to see T2D research conducted towards ‘managing T2D with comorbidities, controlling blood sugar levels, finding a cure and understanding causes of T2D’. 16 When T2D patients were interviewed after a weight loss intervention study, 17 four themes emerged to form a patient narrative of cure for T2D. The results were: ‘Building behavioural autonomy’ as a process of growing confidence to engage in health behaviours that are independent of those of other people.…”