FREQUENTLY ASKED QUESTIONS ON CONSUMER INVOLVEMENT IN RESEARCH
These FAQs were developed in conjunction with PoCoG consumer representatives.
Why should I involve consumers in my research?
Consumers have the capacity to bring a real world perspective of issues most relevant to patients and carers. These views are from a different perspective than those of health professionals, researchers or policy makers. Consumer input in the early stages of research design provides an opportunity to include research outcomes that are of immediate practical relevance to consumers as well as addressing greater scientific questions and/or policy issues.
How can consumers contribute?
The role of consumers in research is to raise awareness and advocate about consumer priorities; advise on strategies to recruit patients/carers to participate in studies; review information statements and consent forms, questionnaires, interview questions and assist with dissemination of the results to both study participants and the wider community.
Funding bodies require inclusion of consumers in the initial stages of study development. Consumers are included as part of grant funding review panels, specifically to assess the relevance of the research to consumers and the level of consumer involvement into the research proposal.
Dissemination of results in lay language is important in terms of feedback to study participants and to the lay media. Consumers can assist with presentation of results in a way that is accessible to people affected by cancer and the wider community.
What support will consumers need to help you?
A number of factors should be considered in promoting consumer involvement in your research. These people are volunteers and may have a high burden of illness. Therefore, flexibility with meeting times, and/or the option for input via phone and email, will facilitate their active involvement and allow for personal circumstances and needs to be accommodated. Costs associated with their involvement should also be considered, for example covering the costs of teleconferences, travel or parking.