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Table 4 Barriers to engaging patients and the public in health research

From: Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

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”