Motivations of Patients With Diabetes to Participate in Research

Abstract

Background Research on the motivations of research participants has focused primarily on vulnerable populations at risk of exploitation, and there is little research on the motivations and reasons of general medical patients participating in research. Given a significant increase in research studies recruiting participants with diabetes, we sought to better understand the motivations of patients with diabetes considering a general medical research protocol. Methods The analyses presented here compare the reasoning and willingness to participate in a hypothetical research study of medically ill subjects (patients with diabetes, n=51) with non-ill (n=57) subjects. Responses on the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) were correlated with demographic variables and scores on the Mini-Mental State Examination (MMSE) and Short-Form-36 (SF-36). Results Overall, 44% of the group with diabetes and 56% of the comparison group indicated a willingness to participate in the research study. The reasons diabetic and comparison groups offered for willingness or unwillingness to participate in research did not differ significantly. 75% mentioned reasons related to treatment, 63% altruism; none mentioned money. Of those patients with diabetes who would not participate in research, 94% cited risk, and 89% expressed an aversion to research. Conclusions The present study suggests that when research is not related to their diagnosis, persons with diabetes do not differ significantly from non-ill comparison subjects in their motivations to participate in research. Given the similarity of our subjects’ motivations to those of other medically ill populations, it may be that investigators can now focus more closely on the decision-making characteristics of their patients involved in clinical research rather than their diagnoses.

Participation in Clinical Research Registries: A Focus Group Study Examining Views From Patients With Arthritis and Other Chronic Illnesses

“…If a trusted provider presents a registry research opportunity to a patient and endorses it as both safe and of scientific value, the patient may be more inclined to join the registry, compared to when information about the registry is conveyed through other means. However, some patients harbor a general distrust towards research, and this sentiment has been conveyed in prior research in which patients feared being treated like a guinea pig or not being allowed to know what they were being treated with (13). Some individuals in the present study noted they do not understand how their personal information will be used, and this distrust can be a barrier to patient participation.…”

“…Several qualitative studies have been conducted to examine various aspects of patients' views regarding research study participation (13)(14)(15)(16). These studies focused primarily on participation in clinical trials.…”

“…Monetary payment, gift cards, and accommodations such as free parking during office visits are material motivators that patients were receptive to. As with prior research (13,17), some patients also expressed the value of nonmaterial motivators, such as the altruistic satisfaction derived from helping others and the opportunity to learn about their disease through the research process. These comments suggest that registry researchers may foster stronger engagement among patients by offering opportunities to learn about how their data are being interpreted compared to other research participants.…”

“…Prior research has used focus groups or structured interviews to qualitatively analyze patient views on research participation, but those studies have focused on participation in clinical trials (13)(14)(15)(16). To our knowledge, only 1 focus group has previously been conducted to explore patient views regarding participation in registry research, and this group was in a Canadian population of patients with neurologic conditions (17).…”

Paying patient and caregiver research participants: putting theory into practice

“…Other reasons given by those who are unwilling to participate include a perceived risk of harm, a reluctance to be the subject of an experiment (not being a ‘guinea pig’) and the expectation that the research would not personally benefit them (Geppert et al . , Bouida et al . ).…”