Patients and research
No study of treatment efficacy could proceed without the active participation of patients. Researchers are completely dependent on the patients they recruit into studies for contributing their time, answering questions, completing questionnaires, submitting to physical examinations, tests and other medical interventions, and complying with follow‐up requirements. Usually this contribution is given freely and without complaint. Research capitalises on people’s respect for science and altruism towards others in similar situations to themselves. ‘It may not help me, but if it helps to advance knowledge and reduce suffering in the future then it’s worth it’, is a common response.
In the light of this, it is surprising that researchers have done such a bad job in explaining their craft and disseminating the results of their studies to members of the public. A paper published in an earlier edition of Health Expectations 1 provided a graphic illustration of the low level of public understanding of randomized controlled trials (RCTs). This survey of Australian cancer patients demonstrated a considerable degree of confusion about the purpose and conduct of RCTs. Nearly one in five respondents thought that clinical trials tested treatments which nobody knows anything about, or that they were only offered when the doctor thought the situation was hopeless.
Studies have also shown that much of the written information provided to patients is not evidence‐based and can sometimes be seriously misleading. 2 Since there is no credit to be gained from universities or funding bodies for contributing to patient information materials, researchers do not get involved in producing them. As a result, patients do not get to hear about their findings and ignorance and suspicion of the research process persists.
An article in this issue describes how the British NHS Research and Development programme is trying to tackle this problem by getting consumers (patients and their representatives) actively involved in the research process. 3 Lay people are invited to participate at all stages: identifying research questions, prioritizing research topics, identifying key outcome variables, commissioning research, helping to carry it out, reviewing reports and helping to disseminate the findings. This important initiative has the potential to make an impact on the nature and quality of research carried out under the auspices of this government‐funded programme. It may also help to increase public understanding of research, but only if other research funders follow suit. Industry, charities and other commissioners of health services research should examine this experiment carefully. It may provide valuable pointers for increasing the relevance and public impact of their work.
Bibliography
- 1. Ellis PM, Dowsett SM, Butow PN & Tattersall MHN. Attitudes to randomized clinical trials among out‐patients attending a medical oncology clinic. Health Expectations, 1999; 2 : 33–43. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2. Coulter A, Entwistle V & Gilbert D. Informing Patients London: King’s Fund, 1998.
- 3. Oliver S, Milne R, Bradburn J, Buchanan P, Kerridge L, Walley T & Gabbay J. Involving consumers in a needs‐led research programme: a pilot project. Health Expectations; 2001; 4 : 18–28. [DOI] [PMC free article] [PubMed] [Google Scholar]