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Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey
BMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7285.519 (Published 03 March 2001) Cite this as: BMJ 2001;322:519Data supplement
Table A Characteristics of randomised controlled trials run by 62 trial coordinating centres
Characteristics
No No of RCTs coordinated 1990-8 10 29 11-50 16 >50 7 Not known 10 Were consumers involved in any stage of the research process? Yes 23 No, but there are plans to involve them in future 17 No plans to involve them 15 No answer about plans 2 Not answered 5 Reasons for not planning to involve consumers* Do not know who to involve
8 Have not thought about it 5 Do not think it is relevant 4 Problem of resources 3 Do not know how to 2 Commercially sensitive 1 Other 1 Were consumers involved in general activities such as setting research agenda? Yes 8 No 15 Description of consumers who were involved in research* Patients or potential patients 6 Members of a self help group 4 Members of organisations representing consumers= interests 4 Members of a community health council 3 Carers 2 Groups asking for research 1 Other 3 RCT=randomised, controlled trial
*Categories are not mutually exclusive.
Table BCharacteristics of 48 trials in which consumers were involved
Characteristics
No of trials Funding* Medical Research Council 19 NHS Research and Development Programme 12 Medical research charity 12 Department of Health 8 Pharmaceutical company 8 Other company 3 European Union 2 Scottish Home and Health Department 1 UK Department for International Development 1 Other 3 No funding 2 Area of research* Perinatal 17 HIV/AIDS 8 Cancer 8 Cardiovascular health 7 Rheumatology 3 Neurosciences 2 Gastroenterology 2 Respiratory 1 Other 8 Stage at which consumers were involved* Drafting or reviewing patient information leaflets 32 Developing the protocol 31 Promoting recruitment 22 Trial steering committee 19 Disseminating results 15 Writing up results 6 Developing questionnaires 3 Preparing self help book 2 Meeting with consumers 2 Randomisation 2 Making a video 1 Monitoring trial 1 Sending results to participants 1 Data monitoring committee 0 Description of consumers who participated* Members of organisations representing consumers= interests 29 Patients or potential patients 25 Members of a self help group 19 Groups asking for research 10 Carers 3 Members of the public who are targets of health promotion programmes 2 Members of a community health council 1 School pupils 1 *Categories are not mutually exclusive.
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