The role and working of reference, or advisory, groups involving disabled people: reviewing the experiences and implications of three contrasting research projects

Abstract

Increasingly in recent years, the involvement of disabled people as co-researchers has been regarded as ‘good practice’. This has been informed by growing participatory and emancipatory research paradigms as well as user focused policy imperatives. The benefits of these shifts apply to the research itself (improved definition, direction, applicability and impact), to non-disabled researchers(personal growth and enhanced understanding of the reflexive research process), to people with disabilities involved as researchers or collaborators (personal growth and enhanced opportunities), and (if externally funded) to the funder whose ways of operating are likely to be challenged profoundly. In this paper, Ann Lewis, Sarah Parsons and Christopher Robertson (based at the University of Birmingham), Anthony Feiler, Beth Tarleton and Debby Watson (based at the University of Bristol) and Richard Byers, Jill Davies, Ann Fergusson and Claire Marvin (based at the University of Cambridge) discuss the work of three independent research teams carrying out concurrent projects. The authors share their experiences of trying to take seriously the participation of disabled people in research. All three projects were informed, to a significant degree, by their respective reference groups of disabled people. The work of these groups in each of the three projects is outlined and then discussed in relation to five common themes: formal contracts with members of reference groups; considerations concerning drawing on an established reference group; planning for reference group involvement; style of reference group involvement; and building on good practice