Aims:
Our evaluation study, after 10 years of Cancer Voices’ Consumer Involvement in Research (CIR) Program’s operation, was designed to assess, evaluate and analyse the views of both researchers who have used the service, and of consumers who are matched to work with them. As background data, we also sought to identify those major cancer research funders which require firm evidence of consumer involvement and/ or include consumers on grant review panels.
Background:
The CIR Program was developed by Cancer Voices to enable informed consumer involvement in cancer research. Trained consumers are matched with requesting researchers, and also participate on Grant Review Panels. Some funders make the former role a requirement for grant funding
Methods:
A questionnaire was developed by Cancer Voices’ CIR Group to elicit answers to five questions about experiences, views, and recommendations. The questions were delivered by Survey Monkey in April 2016, with three email reminders and an over 60% positive response rate. Six major cancer research funders were contacted for information about their required degree of specific consumer involvement.
Results:
Analysis of survey responses showed the views of both researchers and consumers regarding how valuable they thought the interaction was, how it may have influenced the study, what barriers to successful interaction were encountered, how adequate was the training, and what extra help either party might need. Suggestions to fine tune the process and its value were noted. The six cancer research funders' requirements, or lack of them, were collated.
Conclusions:
Evaluation of this innovative service of providing informed consumer input to researchers seeking it, is timely; as is a parallel survey of the consumer engagement requirements of the cancer research funders.
The outcomes of both investigations are being used to shape future interaction, to fine-tune the existing CIR process and to encourage all cancer research funders to understand its value and to formally apply the now well accepted principle of consumer involvement in research.