1. STS 12/05/031 Talking to Guinea Pigs: engaging the users in the development of new health technology Norma Morris, Jem Hebden & Brian Balmer, University College London

2. STS 12/05/032 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. STS 12/05/033 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. STS 12/05/034 Source and detector fibres attached to the three rings

5. Optical Mammography The patient interface

6. STS 12/05/036 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. STS 12/05/037 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. STS 12/05/038 ‘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. STS 12/05/039 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. STS 12/05/0310 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. STS 12/05/0311 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