SERVICE USER INVOLVEMENT IN RESEARCH
Here I am talking about service users involvement as partners in the conduct of research, not as participants in research projects.
Between 2007 and 2015 I was an associate director of the NIHR-Mental Health Research Network (MHRN) with lead responsibility for developing the involvement of service users and carers as partners in research. During that period, over 700 projects were adopted by the Network, nearly all of which has a service user involvement plan, and most had carer involvement plan. Over 300 service users were on our database as interested in contributing to mental health research.
In a configuration of the clinical research networks, topic-specific networks have ceased to exist and are now incorporated into regional local clinical research networks.
This paper reports on the results of an audit of service user involvement in a random selection of projects.
The NIHR Mental Health Research Network provided an important forum for a dialogue between service users and researchers; a kind of two-way tutoring process – Researchers share knowledge with service users about, for example, different methodologies for answering different kinds of questions (including their strengths and weaknesses), about where progress can be expected, and about what questions seem to be the most important; as well service users tutor researchers – about, for example, the lived experience of mental illness in all of its complexity and implications, or about what outcomes matter. This dialogue will lead to what have been very aptly called ‘tutored’ preferences in research with, eventually, one hopes, an agenda constructed by informed deliberators who will understand and take account of competing interests, and who will agree on the problems to be researched, the kinds of science required to solve them, and the constraints that need to be imposed (such as ethical and budgetary ones). This kind of dialogue is likely to produce high quality research – it embodies the full range of expertise, set in a context that has been thoroughly explored, with methods whose validity has been challenged during the deliberation phase.
This is a move towards what Philip Kitcher in his book Science, Truth and Democracy (2001) has called a ‘well-ordered science’, effectively involving a democratization of the science agenda – not leaving it in the hands of ‘elite groups’ – generally the community of scientists, together with a greater or lesser involvement of funders. Researchers often assume that what should be researched is determined by the nature of the world – that the science points to what should be researched next. But Kitcher argues very convincingly that what is researched is not determined by the nature of the world – it is dependent on human interest. This determines what it is appropriate to research. But deliberations need to be fully informed both about the science and about the human interests. This being so it is essential that we think about how those interests – preferences which are well-tutored – can be brought to bear on the research agenda. Here, I think NIHR-MHRN Service Users in Research (and FACTOR for carers) have been at the cutting-edge. But there is still a long way to go.
More on this subject here.