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An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial
Anne L Langston1, Marilyn McCallum, Marion K Campbell
1Health Services Research Unit, University of Aberdeen, Aberdeen, UK. a.langston@abdn.ac.uk
Clinical Trials (London, England)
|November 11, 2005
Summary
Consumer involvement in clinical trials, like the PRISM trial for Paget's disease, enhances participant information and recruitment. Collaboration with patient groups, such as the National Association for the Relief of Paget's Disease (NARPD), benefits both research and patient communities.
Area of Science:
- Health Services Research
- Patient and Public Involvement in Research
- Clinical Trial Management
Background:
- Consumer involvement in health research is generally beneficial, though often limited in individual studies.
- An integrated relationship between clinical trial organizers and a consumer organization was established for the PRISM trial.
- The National Association for the Relief of Paget's Disease (NARPD) is the sole UK support group for Paget's disease patients.
Purpose of the Study:
- To outline experiences of an integrated relationship between a clinical trial team and a consumer organization.
- To detail the specific roles of the consumer organization (NARPD) in the PRISM trial.
- To evaluate the benefits and implications of this integrated approach for both parties.
Main Methods:
- The PRISM trial, a UK multicenter randomized controlled trial for Paget's disease of the bone, involved close collaboration with NARPD.
- NARPD's integral roles included peer-review, trial steering committee membership, participant advice, and trial promotion.
- The study outlines the reciprocal benefits derived from this integrated approach.
Main Results:
- Benefits for the PRISM trial included enhanced participant recruitment via NARPD, better-informed participants, patient advocacy, and proactive collaborators.
- Benefits for NARPD and Paget's disease sufferers included increased disease awareness, improved access to health research, and enhanced knowledge transfer with healthcare professionals.
- The integrated approach proved worthwhile, yielding significant improvements in recruitment and participant information flow.
Conclusions:
- An integrated approach between clinical trial teams and consumer organizations is highly beneficial.
- This model can significantly improve participant recruitment and the quality of information flow.
- Resource implications for both the trial team and the consumer organization should be considered.