Talking to Guinea Pigs: engaging the users in the development of new health technology

1. Talking to Guinea Pigs: engaging the users in the development of new health technology Norma Morris, Jem Hebden & Brian Balmer, University College London

2. Aims and methods • involve research subjects in steering the development of a new technology • assess kind of contribution they can make and researchers’ use of this input • Methods include monitoring scan sessions, interviewing volunteers, and systematic feedback to research team

3. Project set-up • Collaboration with a Medical Physics team who are developing optical imaging for diagnosis of breast cancer • programme requires tests on human subjects: first, healthy volunteers, then volunteer patients with known lesions • we supplement technical data acquisition with data on subjects’ experience

4. Source and detector fibres attached to the three rings

5. The patient interface Optical Mammography

6. Summary of results to date • practical suggestions for improvement of the man-machine interface • patient/volunteer criteria for acceptance of new instrumentation and process • social factors eg researcher-subject relationship) important for the anxieties and satisfaction of patient/volunteer

7. Coda: what volunteers told us • About ‘feeling comfortable’ - anxieties are directed more at social than physical aspects of the test situtation • About privacy/embarrassment – avoiding the stress of ‘exposing yourself’ is an important criterion of acceptability • About ‘performance ‘- volunteers need to feel they have performed well – another social anxiety • See the quotes that follow

8. ‘Feeling comfortable’ • I liked – feeling comfortable – you know, with the people. I think that would be important for a lot of people. [V2)] • There wasn’t anything that I didn’t feel comfortable with. ...... I was mentally comfortable. [P4] • she was really so friendly: she made me feel really comfortable [P8]

9. Invasiveness - privacy/embarrassment • it was basically just being anxious about exposing yourself. Because I didn’t feel anxious about the test. [P2] • it didn’t bother me standing there with, you know, people looking at my breasts .. but someone else may find that a little bit – strange [V2] • it’s quite private ... quite concealed. I didn’t feel self-conscious [P1]

10. Performance • Is everything all right? ....I’m paranoid in case I mess up on it [P2] • I think .... the doctor [should be] more talking to you; to reassure you, that you are OK, or in a good position, or you are doing something or not [P5] • I feel such a failure [P11]

11. Conclusions • Not guinea-pigs, but collaborators • Volunteers can contribute to the research- practical advice from experience- criteria for patient acceptablility- continuing cooperation and improvement in research quality if the relationship is right