Involving consumers in health research: what do consumers say?

Abstract

Objectives: To ensure that the contribution of patients and consumers in health research is better understood, respected and fully utilised. Type of program or service: Consumer representative networks that form part of a broader quality improvement program in local health services. Methods: Consultations were held with members of health consumer networks in Sydney, Northern Sydney and Western Sydney Local Health Districts, and the Sydney Children’s Hospitals Network (at Westmead) about how to better involve consumers in health research. Results: Feedback from 20 volunteers suggested that consumer involvement in research would be improved if: consumers understood more about research; communications clearly explained the research, why it was relevant to consumers and what might be involved; consumers’ contributions were heard and respected; and being involved in research was made an easy and positive experience. Lessons learnt: People want to be involved in health research, and have valuable contributions to make. We must ensure that the potential contribution of patients and consumers is fully utilised, and get a great deal better at communicating benefits and risks.