Overcoming the challenges to consumer involvement in cancer research

Within the last decade, there have been many government initiatives to promote consumer involvement in research, especially in cancer. At the same time, the number and influence of consumer groups themselves have expanded. However, the organizational infrastructure necessary to facilitate consumer involvement has not been developed. Consequently, consumer involvement has tended to remain essentially localized and project driven, with no strategic or regional lead.

The opportunities for consumers to influence the research process at each stage of the research process are identified. The different types of consumer involvement are also examined. Novel ways of identifying and recruiting consumers that have been adopted by one cancer network are discussed.

An organizational model designed by one cancer network for involving consumers in research is illustrated. Three innovations are examined in detail. First, how three open consumer conferences have increased awareness of research among service users. Second, the recruitment of consumers to sit on project steering groups and a committee that provides a strategic overview of current research. Third, the establishment of a Consumer Panel for Research where reimbursed, trained consumers are able to provide a considered consumer perspective in a range of settings.

Cancer networks need to take the lead in the development of an organizational infrastructure to facilitate consumer involvement. The model developed in Sheffield could be generalizable to other diseases and other health-care settings.