Consumer involvement in research is essential

Editor—We agree with Goodare and Lockwood that consumer involvement in the research process is lacking.¹ Our work on osteoarthritis has shown the potential benefit of involving consumers when trying to prioritise the research agenda.

In a survey of 112 people with osteoarthritis of the knee we found that a wider range of treatment options was being used by patients than the research literature would suggest. From a recent systematic review of the available literature on treatments for osteoarthritis of the knee (930 studies) research on physiotherapy, educational, and complementary treatments was relatively uncommon, at 3.5%, 6.5%, and 5.3% of all studies respectively. Altogether 93 (83%) people responded to our questionnaire, not all of whom answered every question. Fifty two (63%) reported that they had tried physiotherapy, 42 (53%) had received educational interventions, and 18 (23%) used complementary therapies. Thus the literature does not reflect the range of treatments used by patients. There are several reasons for this, but certainly one of them is a lack of consumer involvement in research priority setting (J Chard, unpublished findings).

The wholesale inclusion of consumers in the research process may add to the time and cost of individual projects, but consumer involvement will greatly enhance the overall relevance of clinical research. It will ensure that the most fruitful research questions are addressed and the most appropriate outcome measures used, thus maximising the potential for the results to be relevant and beneficial to research consumers. Furthermore, it should lead to a more efficient use of research resources.

We are not Luddites calling for an end to “blue sky” research, and we do not want to see research by committee, but where the research relates directly to patients and their experience of an illness it is essential that their opinions are gathered.

Sufficient evidence is available to show that the involvement of consumers in all aspects of research benefits both researchers and consumers and that such endeavours are achievable.²,³ We believe that for widespread adoption of consumer involvement to occur, pressure will have to be brought to bear by journal editors and research councils.