Patient and public involvement in UK health research emerged in the 1980s, most prominently in mental health, HIV/AIDS, maternity care, and breast cancer. As an activity, it originated in the disability protest movement that from the 1960s onwards sought to replace the traditional model of medical care and welfare with a new 'social model' of disability. It was considered that whoever controlled the research controlled the evidence upon which disability policy was based, and as such great importance was placed on 'control' of the disability research agenda.
The agenda for patient and public involvement in cancer research has never been quite so radical, but nevertheless has had a relatively strong presence in clinical research over the past 20 or so years. Following the controversial publication of interim results from a charity-funded study of survival rates for women with breast cancer who had received complementary therapy at the Bristol Cancer Help Centre, the 'Consumers Advisory Group for Clinical Trials' emerged in late 1994 to encourage patient and carer involvement in the design of breast cancer clinical trials. Involvement in cancer clinical trials has focussed particularly on the 'interface' between researchers and participants - aiming to improve recruitment processes, for example, or participant information leaflets - and on the trial design itself, with an emphasis on the inclusion of 'quality of life' assessments. The ProtecT trial, for example, conducted an 'action research'-type study within a trial of treatments for prostate cancer. Interviews with participants and recordings of recruitment appointments were used to explore views about involvement in the study, interpretations of study information, and the acceptability of randomisation and treatments. Findings were fed back into the trial design, and accrual gradually rose from 30% to 70% of eligible patients.
On a national level, initiatives include the NCRI Consumer Liaison Group (CLG), established in June 2000 "to provide a national overview of consumer concerns and to act as a central resource for guidance on consumer issues in cancer research." The principal role played by CLG members, the majority of which are people affected by cancer, is to sit on the NCRI Clinical Studies Groups that develop new clinical studies and take them forward for funding.
Involvement in supportive and palliative care research is an area of some controversy. Some commentators have argued that involvement with the seriously ill or those facing the end of their lives is a higher priority for researchers and the research agenda rather for service users themselves and so is an unethical, indeed exploitative, activity. Others disagree, citing evidence of positive involvement experiences for people with life-limiting conditions; indeed a 2005 editorial in the journal Palliative Medicine highlighted some of the challenges and some of the benefits that service users can experience from involvement in palliative care research.
Further resources on this topic
Review of the literature on service user and carer involvement in cancer research in England
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