1.1 - What are the reasons for patient and public involvement?
There are both political and scientific reasons for patient and public involvement in research (Entwistle et al 1998, ref. 1 ). Patients and the public have a legitimate interest in research as both the owners and the potential beneficiaries. Furthermore, patients and the wider public often have insights and expertise that complement those of health care professionals and researchers and may add value to the research. They may have ideas that improve the relevance of the research to problems faced by patients and the wider public; or ideas for improving how the data is collected, analysed or reported.
A systematic review, complemented by a survey and interviews, reported frequent mismatches in the research priorities of professionals and service users (Grant-Pearce et al 1998, ref. 3 ). They attributed these to differences in: values and life experiences; understandings of science and technology and the research process; and access to decision making structures. They also noted differences in priorities between different groups of professionals, such as nurses and midwives compared with doctors. They concluded that health research can benefit considerably from increased patient and public involvement to allow mismatches to be addressed.
Research teams may find it easier to think how patients or the public might help their research once they know how patient and public involvement has improved other research projects. A survey of patient and public involvement in controlled trials found that investigators responding on behalf of 48 individual trials were mostly positive, commenting that input from patients or the public had helped refine research questions, improve the quality of patient information, and make the trial more relevant to the needs of patients (Hanley et al 2001, ref. 4). Nevertheless, researchers have concerns about the practicalities of patient and public involvement and have expressed a need for more direction and resources (Telford 2002, ref. 15 ).
More can be learnt from specific examples where patient and public involvement has had a positive effect on controlled trials and systematic reviews, in terms of:
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