Table 4 Barriers to engaging patients and the public in health research
Barrier | Participant example |
|---|---|
Funding, time and compensation | - “Funding to have adequate support” - “Funding for meetings with them” - “Funding sufficient to complete a project with sufficient power to complete the research problem” - “Their time. When we ask patients/public to engage, it is usually as a volunteer” - “Parking access, time required for participation, unable to offer much incentive” - “Lack of adequate compensation for time and training” - “The expensive and time consuming nature of engaging patients and the public in health research” - “Mismatch between funding timelines and fieldwork time needed to engage marginalized and vulnerable populations” - “Graduate studies timelines required to do true community based research” |
Skills and motivation | Patient - “Interest by the patients/community in my research/area of research” - “Increasing motivation and excitement from patients/public for the project” - “Long term relationships are difficult as people move from small grassroots organizations readily. My advisory group is an ever-changing, ever-growing group. A few people clearly provide ongoing, regular constant involvement and they have become part of a smaller steering committee.” Researcher - “Community organizations want researchers to support their programs/activities, even when research findings suggest a more complex position on a topic. Difficulty finding participants who are interested in more than brief interactions.” - “Wondering how patients would understand the value of my research” - “My own lack of training/steep learning curve. I kind of muddle through” |
Recruitment | - “Access to suitable patients from clinics” - “recruitment (costs, success in reaching appropriate numbers) is often a problem - time-consuming making phone calls - sometimes difficult for older adults to access University campus” - “Finding patient participants with direct experience with treatments that are not yet available in Canada.” |
Logistics | - “Engaging patients and public can be expensive and time consuming; often timelines for using funding and providing reports seems too short for the fieldwork needed to engage patients/public, especially with marginalized and vulnerable populations. Graduates studies timelines also can make it impractical to do true community based participatory research. I think funding is slowly getting easier to provide support for time needed to do engagement research, but it is a process.” - “Time, practical factors such as geographical limitations” - “Time, space, clear goals, good representation, continuing involvement, good merit” - “Timing and location” - “Privacy legislation” |