Searching for the Impact of Participation in Health and Health Research: Challenges and Methods
Table 3
An a priori theoretical framework for participation in diabetes research.
Propositions about involvement by stage of research
Priority setting: Getting people to identify the most important issues and participate in setting priorities for research will increase interest in participating in codesign of the intervention. Deciding priorities without involvement leads to questions on the relevance of the research.
Proposal writing: Involving people in writing proposals for funding increases collective ownership for research projects. Involving people after proposals are written risks less ownership and may make people feel that they are not equal partners in the project.
Intervention design: Asking people to help with the design of the intervention produces more culturally acceptable interventions, more appropriate approaches to recruitment, and more user-friendly information and tools. Excluding people from the design process may lead to project information that is difficult to understand, less cultural acceptance, and lower recruitment rates.
Implementation: Involving people in (a) recruitment produces high recruitment rates because they are able to help participants understand the relevance and benefits of the research. (b) delivering the intervention may increase trust and communication, and foster relationships which lead to high retention rates and good levels of active participation. (c) data collection and analysis may produce additional insight into how and why an intervention works (or does not work).
Dissemination: Involvement at any stage (a) promotes understanding of the aims and benefits of the research, creates local ownership and likelihood that a local network is created to share what is learned, and (b) helps to ensure that findings is relevant and understandable.
