Table 1 Demographics of respondents

Researcher role

–

–

 CEO/Chair/director

4 (31%)

 Research manager/program manager/project officer

5 (38%)

 Principal investigator

1 (8%)

 Trial coordinator

2 (15%)

 Steering committee member

1 (8%)

Has ever involved consumers in research?

–

–

 Yes

19 (76%)

 No, and no plans at present

2 (8%)

 No, but plans in future

4 (16%)

Method of invitation to participate as a consumer

–

–

 Direct invitation

14 (52%)

 Expression of interest

7 (26%)

 Other

6 (22%)

Consumer role

–

–

 Patient or carer

9 (60%)

 Attendee of support group

1 (7%)

 Clinical trial participant

1 (7%)

 Other

4 (27%)

 Not answered

12

Consumer type

–

–

 Patient, potential patient, carer or person using health service

7 (26%)

 Consumer representative

9 (33%)

 Both

11 (41%)

Have participated in a clinical trial

–

–

 Yes

5 (19%)

 No

22 (81%)

Length of involvement in research, years, median (min, max)

–

–

4.75 (0.5 to 28)