‘Take small steps to go a long way’ consumer involvement in research into complementary and alternative therapies

This investigation set out to learn about consumer involvement in complementary medicine research from those who have experience of practice in this area. A literature search was combined with written and oral responses from key people and organisations in the UK. Letter or e-mail contact was made with 59 key people and organisations and 43 people responded. Eighteen respondents were interviewed. The overall level of consumer involvement was low but participants provided examples of experiences of consumer involvement in commissioning, designing, carrying out, and disseminating research. Clear roles and tasks and a consumer-friendly research environment, enabled consumers to contribute, gain confidence, and gradually widen their areas of involvement. There appears to be no single ‘right way’ for researchers and consumers to work together, but with experience and mutual respect researchers became increasingly enthusiastic about the value of the consumer perspective. As one consumer said: ‘You have to take small steps to go a long way’.