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

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

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

STS 12/05/034 Source and detector fibres attached to the three rings

Optical Mammography The patient interface

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

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

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]

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]

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]

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