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Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach
S Oliver1, L Clarke-Jones, R Rees
1Social Science Research Unit, Institute of Education, London, UK.
Health Technology Assessment (Winchester, England)
|April 15, 2004
Summary
Meaningful consumer involvement in health research requires resources, time, and effective communication. Empowering consumers through collaboration and support enhances research prioritization and outcomes.
Area of Science:
- Health Services Research
- Research Prioritization
- Consumer Involvement in Research
Background:
- National and regional research and development (R&D) programs face challenges in identifying and prioritizing research topics.
- Meaningful participation of consumers in research identification and prioritization is crucial but often hindered by various barriers.
Purpose of the Study:
- To examine the processes and outcomes of research identification and prioritization in health R&D programs.
- To identify barriers and facilitators for effective consumer participation in research prioritization.
Main Methods:
- Systematic review of electronic databases and interviews with UK consumers and research program managers.
- Development and application of a framework to analyze consumer involvement, considering types of consumers, initiation, degree of involvement, communication forums, decision-making methods, and practicalities.
- Analysis of context (institutional, geographical, historical) and underpinning theories in consumer involvement.
Main Results:
- 286 documents were identified regarding consumer involvement in research prioritization; 87 provided detailed examples.
- Most literature comprised descriptive reports by researchers; a few were by consumer participants or independent researchers.
- Conclusions are drawn from individual reports and comparative analyses, acknowledging limitations in rigorous research.
Conclusions:
- Effective consumer involvement necessitates adequate skills, resources, time, and appropriate working practices.
- Empowering consumers through collaboration, information, resources, and support enhances their role in prioritizing research topics.
- Overcoming barriers requires strong leadership, purposeful outreach, investment in communication, training, and building relationships with organized consumer groups.