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Involving consumers in a needs-led research programme: a pilot project

Involving consumers in a needs-led research programme: a pilot project
Involving consumers in a needs-led research programme: a pilot project
Objectives To describe the methods used for involving consumers in a needs-led health research programme, and to discuss facilitators, barriers and goals.
Design In a short action research pilot study, we involved consumers in all stages of the Health Technology Assessment (HTA) Programme: identifying and prioritizing research topics; commissioning and reporting research; and communicating openly about the programme. We drew on the experience of campaigning, self-help and patients' representative groups, national charities, health information services, consumer researchers and journalists for various tasks. We explored consumer literature as a potential source for research questions, and as a route for disseminating research findings. These innovations were complemented by training, one-to-one support and discussion. A reflective approach included interviews with consumers, co-ordinating staff, external observers and other programme contributors, document analysis and multidisciplinary discussion (including consumers) amongst programme contributors.
Results When seeking research topics, face-to-face discussion with a consumer group was more productive than scanning consumer research reports or contacting consumer health information services. Consumers were willing and able to play active roles as panel members in refining and prioritizing topics, and in commenting on research plans and reports. Training programmes for consumer involvement in service planning were readily adapted for a research programme. Challenges to be overcome were cultural divides, language barriers and a need for skill development amongst consumers and others. Involving consumers highlighted a need for support and training for all contributors to the programme.
Conclusions Consumers made unique contributions to the HTA Programme. Their involvement exposed processes which needed further thought and development. Consumer involvement benefited from the National Co-ordinating Centre for Health Technology Assessment (NCCHTA) staff being comfortable with innovation, participative development and team learning. Neither recruitment nor research capacity were insurmountable challenges, but ongoing effort is required if consumer involvement is to be sustained.
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consumer involvement, health technology assessment, NHS R & D Programme, partnership, research agenda, research priorities
1369-6513
18-28
Oliver, Sandy
4483a2b3-42b4-42de-8d02-f768fbad7b7e
Milne, Ruairidh
bd90470b-bba2-49a1-aa12-f1319d78afc2
Bradburn, Jane
314bc3cc-a87d-4088-a90a-2b44e14e315e
Buchanan, Phyll
373e2f58-023e-4322-96e4-528036623cef
Kerridge, Lynn
c9fc82ff-a7c0-4a44-9a0d-b675260ea01a
Walley, Tom
6f872c27-c3e5-4e86-93b5-7cdec09e90a6
Gabbay, John
d779b76c-febe-461b-b3bb-e110163f114a
Oliver, Sandy
4483a2b3-42b4-42de-8d02-f768fbad7b7e
Milne, Ruairidh
bd90470b-bba2-49a1-aa12-f1319d78afc2
Bradburn, Jane
314bc3cc-a87d-4088-a90a-2b44e14e315e
Buchanan, Phyll
373e2f58-023e-4322-96e4-528036623cef
Kerridge, Lynn
c9fc82ff-a7c0-4a44-9a0d-b675260ea01a
Walley, Tom
6f872c27-c3e5-4e86-93b5-7cdec09e90a6
Gabbay, John
d779b76c-febe-461b-b3bb-e110163f114a

Oliver, Sandy, Milne, Ruairidh, Bradburn, Jane, Buchanan, Phyll, Kerridge, Lynn, Walley, Tom and Gabbay, John (2001) Involving consumers in a needs-led research programme: a pilot project. Health Expectations, 4 (1), 18-28. (doi:10.1111/j.1369-7625.2001.00113.x).

Record type: Article

Abstract

Objectives To describe the methods used for involving consumers in a needs-led health research programme, and to discuss facilitators, barriers and goals.
Design In a short action research pilot study, we involved consumers in all stages of the Health Technology Assessment (HTA) Programme: identifying and prioritizing research topics; commissioning and reporting research; and communicating openly about the programme. We drew on the experience of campaigning, self-help and patients' representative groups, national charities, health information services, consumer researchers and journalists for various tasks. We explored consumer literature as a potential source for research questions, and as a route for disseminating research findings. These innovations were complemented by training, one-to-one support and discussion. A reflective approach included interviews with consumers, co-ordinating staff, external observers and other programme contributors, document analysis and multidisciplinary discussion (including consumers) amongst programme contributors.
Results When seeking research topics, face-to-face discussion with a consumer group was more productive than scanning consumer research reports or contacting consumer health information services. Consumers were willing and able to play active roles as panel members in refining and prioritizing topics, and in commenting on research plans and reports. Training programmes for consumer involvement in service planning were readily adapted for a research programme. Challenges to be overcome were cultural divides, language barriers and a need for skill development amongst consumers and others. Involving consumers highlighted a need for support and training for all contributors to the programme.
Conclusions Consumers made unique contributions to the HTA Programme. Their involvement exposed processes which needed further thought and development. Consumer involvement benefited from the National Co-ordinating Centre for Health Technology Assessment (NCCHTA) staff being comfortable with innovation, participative development and team learning. Neither recruitment nor research capacity were insurmountable challenges, but ongoing effort is required if consumer involvement is to be sustained.
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More information

Published date: May 2001
Keywords: consumer involvement, health technology assessment, NHS R & D Programme, partnership, research agenda, research priorities

Identifiers

Local EPrints ID: 62005
URI: http://eprints.soton.ac.uk/id/eprint/62005
ISSN: 1369-6513
PURE UUID: 2495decc-b24e-4ebe-8cc3-9646af6c4e6e
ORCID for Ruairidh Milne: ORCID iD orcid.org/0000-0002-5117-4380

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Date deposited: 15 Sep 2008
Last modified: 16 Mar 2024 02:59

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Contributors

Author: Sandy Oliver
Author: Ruairidh Milne ORCID iD
Author: Jane Bradburn
Author: Phyll Buchanan
Author: Lynn Kerridge
Author: Tom Walley
Author: John Gabbay

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