A research involvement continuum
Roger Steel, INVOLVE (formerly Consumers in NHS Research)
Abstract
INVOLVE advise on public involvement across a very wide range of types of research in health and social care. We recognise that there are different levels of involvement on a continuum, from 'consultation' at one end to 'collaboration' and then 'user control' at the opposite end. In the last 2 years that we have begun to do serious work on this user-controlled end, following feedback from social care service users. There is currently a project underway to explore definitions of user-controlled research. Hopefully, this will help us to overcome some of the barriers that this type of research faces because research commissioners don't necessarily understand or recognise what it is.
The issue of what counts as 'evidence', is a key issue when looking at the barriers to User Controlled and Emancipatory Research. For many commissioners, somehow 'Emancipatory' Research - research that principally aims at, and actually improves the lives of those involved, does not necessarily equate with the idea of 'unbiased' scientific 'evidence' and therefore does not merit funding, resources, or even consideration.
The work of INVOLVE is to promote the involvement of people who use services in health and social care research. We have been at the coalface in different forms since 1996. Things have changed in that time, but there is still a long way to go. One thing is that there is now an increasing dialogue across the whole field of research as a result of promoting involvement. Commissioners now meet real service users, for example, and researchers who have never even heard of Emancipatory research can find themselves having to think about it. This dialogue is valuable. Anyone who is invested with powers can go on introducing one 'system' or policy after another as a result of 'evidence' (or not), but perhaps real long-term cultural change actually comes from dialogue and new experience.