The University of Southampton
University of Southampton Institutional Repository

Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach

Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach
Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach
Objectives

The objectives of the study were to:

1) look at the processes and outcomes of identification and prioritisation in both national and regional R&D programmes in health and elsewhere, drawing on experiences of success and failure

2)identify the barriers to, and facilitators of, meaningful participation by consumers in the research identification and prioritisation.
Framework for examining consumer involvement

We devised a framework for examining the diverse ways of involving consumers in research. It identified key distinguishing features as: the types of consumers involved; whether consumers or researchers initiated the involvement; the degree of consumer involvement (consultation, collaboration or consumer control); forums for communication (e.g. committees, surveys, focus groups); methods for decision-making; and the practicalities for implementation. We considered context (institutional, geographical and historical setting) and underpinning theories as important variables for analysing examples of consumer involvement.

We translated the principles for minimising bias and maximising transparency to reviewing a body of literature that is largely descriptive or reflective rather than based on systematic research methods. We assumed, conventionally, that well-conducted research studies would be less biased and more reliable. In order to draw on other reports where necessary, we assumed that reports where consumers shared authorship with researchers would be less biased, that reports originating in the UK would be more relevant and that findings supported by more reports or by reports originating from both the UK and elsewhere would be more generalisable.

Methods

We systematically sought literature through databases, handsearching and citation tracking, and also through people in the UK who were (a) known to have worked to identify or prioritise health research topics or (b) recognised consumer specialists or advocates.

We included reports if they explicitly mentioned consumer involvement in identifying or prioritising research topics. We also interviewed consumers and research programme managers from some UK examples. We applied the innovative framework to review data from interviews and reports.

Results

We found 286 documents explicitly mentioning consumer involvement in identifying or prioritising research topics. Of these, 91 were general discussions, some of which included a theoretical analysis or a critique of research agendas from a consumer perspective, 160 reported specific efforts to include consumers in identifying or prioritising research topics and a further 51 reported consumers identifying or prioritising research topics in the course of other work. We found detailed reports of 87 specific examples. These included:

>inviting consumer groups to collaborate in setting research agendas (13)
>consulting consumer groups (12)
>inviting individual consumers to collaborate in identifying and/or >prioritising research topics (17)
>consulting individual consumers (13)
>responding to consumer action with a collaboration (13)
>responding to consumer action by consulting with consumers (3)
>responding to consumer action by conducting research without consumer input (6)
>consumers independently identifying or prioritising research topics (10).

Most of this literature was descriptive reports by researchers who were key actors in involving consumers. A few reports were written by consumer participants. Fewer still were by independent researchers. Our conclusions are therefore not based on rigorous research, but implications for policy are drawn from individual reports and comparative analyses.

Conclusions

Research programmes have sufficient collective experience of involving consumers to plan their agendas working directly or indirectly with consumers. Appropriate methods depend upon the tasks to be undertaken, the consumers to be involved and the support required. Productive methods for involving consumers require appropriate skills, resources and time to develop and follow appropriate working practices. The more that consumers are involved in determining how this is to be done, the more research programmes will learn from consumers and about how to work with them.

More success might be expected if research programmes embarking on collaborations approach well-networked consumers and provide them with information, resources and support to empower them in key roles for consulting their peers and prioritising topics. To be worthwhile, consultations should engage consumer groups directly and repeatedly in facilitated debate; when discussing health services research, more resources and time are required if consumers are drawn from groups whose main focus of interest is not health.

Barriers to consumer involvement include: poor representation of consumers; consumers’ unfamiliarity with research and research programmes’ unfamiliarity with consumers; negative attitudes and poor working relationships; difficulties in communication; and time constraints. These barriers can largely be overcome with good leadership, purposeful outreach to consumers, investing time and effort in good communication, training and support and thereby building good working relationships and building on experience.

Organised consumer groups capable of identifying research priorities need to find ways of introducing their ideas into research programmes. They should be aware that consumers making efforts to (re)design structures and procedures have had greater influence over research agendas. Consumers are particularly well placed to reflect on their experience of research agenda setting in order to build the evidence about their priorities and methods for involving them.
publishing, comparative study, role, time, interviews, empowerment, health-service, priorities, decision making, participation, england, review, consumers, literature, report, london
National Coordinating Centre for Health Technology Assessments
Oliver, S.
ebf030f1-1cbe-43ee-9aab-306d8efc22e8
Clarke-Jones, L.
d1d15546-5952-4586-8e79-e5e7f81d5acf
Rees, R.
d46ad0bf-73a6-4732-ba66-93fd6301fbea
Milne, R.
bd90470b-bba2-49a1-aa12-f1319d78afc2
Buchanan, P.
6a302e7f-3926-464d-a9e9-56a6131740d4
Gabbay, J.
d779b76c-febe-461b-b3bb-e110163f114a
Gyte, G.
8621f999-abb3-4b54-8d8c-ccc6c7cfba9f
Oakley, A.
4ec9124c-d85a-470d-91e6-ada3bdd09bfa
Stein, K.
5f0b93b6-a47b-4976-b813-f498931d5286
Oliver, S.
ebf030f1-1cbe-43ee-9aab-306d8efc22e8
Clarke-Jones, L.
d1d15546-5952-4586-8e79-e5e7f81d5acf
Rees, R.
d46ad0bf-73a6-4732-ba66-93fd6301fbea
Milne, R.
bd90470b-bba2-49a1-aa12-f1319d78afc2
Buchanan, P.
6a302e7f-3926-464d-a9e9-56a6131740d4
Gabbay, J.
d779b76c-febe-461b-b3bb-e110163f114a
Gyte, G.
8621f999-abb3-4b54-8d8c-ccc6c7cfba9f
Oakley, A.
4ec9124c-d85a-470d-91e6-ada3bdd09bfa
Stein, K.
5f0b93b6-a47b-4976-b813-f498931d5286

Oliver, S., Clarke-Jones, L., Rees, R., Milne, R., Buchanan, P., Gabbay, J., Gyte, G., Oakley, A. and Stein, K. (2004) Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach Tonbridge Wells, UK. National Coordinating Centre for Health Technology Assessments 154pp.

Record type: Monograph (Project Report)

Abstract

Objectives

The objectives of the study were to:

1) look at the processes and outcomes of identification and prioritisation in both national and regional R&D programmes in health and elsewhere, drawing on experiences of success and failure

2)identify the barriers to, and facilitators of, meaningful participation by consumers in the research identification and prioritisation.
Framework for examining consumer involvement

We devised a framework for examining the diverse ways of involving consumers in research. It identified key distinguishing features as: the types of consumers involved; whether consumers or researchers initiated the involvement; the degree of consumer involvement (consultation, collaboration or consumer control); forums for communication (e.g. committees, surveys, focus groups); methods for decision-making; and the practicalities for implementation. We considered context (institutional, geographical and historical setting) and underpinning theories as important variables for analysing examples of consumer involvement.

We translated the principles for minimising bias and maximising transparency to reviewing a body of literature that is largely descriptive or reflective rather than based on systematic research methods. We assumed, conventionally, that well-conducted research studies would be less biased and more reliable. In order to draw on other reports where necessary, we assumed that reports where consumers shared authorship with researchers would be less biased, that reports originating in the UK would be more relevant and that findings supported by more reports or by reports originating from both the UK and elsewhere would be more generalisable.

Methods

We systematically sought literature through databases, handsearching and citation tracking, and also through people in the UK who were (a) known to have worked to identify or prioritise health research topics or (b) recognised consumer specialists or advocates.

We included reports if they explicitly mentioned consumer involvement in identifying or prioritising research topics. We also interviewed consumers and research programme managers from some UK examples. We applied the innovative framework to review data from interviews and reports.

Results

We found 286 documents explicitly mentioning consumer involvement in identifying or prioritising research topics. Of these, 91 were general discussions, some of which included a theoretical analysis or a critique of research agendas from a consumer perspective, 160 reported specific efforts to include consumers in identifying or prioritising research topics and a further 51 reported consumers identifying or prioritising research topics in the course of other work. We found detailed reports of 87 specific examples. These included:

>inviting consumer groups to collaborate in setting research agendas (13)
>consulting consumer groups (12)
>inviting individual consumers to collaborate in identifying and/or >prioritising research topics (17)
>consulting individual consumers (13)
>responding to consumer action with a collaboration (13)
>responding to consumer action by consulting with consumers (3)
>responding to consumer action by conducting research without consumer input (6)
>consumers independently identifying or prioritising research topics (10).

Most of this literature was descriptive reports by researchers who were key actors in involving consumers. A few reports were written by consumer participants. Fewer still were by independent researchers. Our conclusions are therefore not based on rigorous research, but implications for policy are drawn from individual reports and comparative analyses.

Conclusions

Research programmes have sufficient collective experience of involving consumers to plan their agendas working directly or indirectly with consumers. Appropriate methods depend upon the tasks to be undertaken, the consumers to be involved and the support required. Productive methods for involving consumers require appropriate skills, resources and time to develop and follow appropriate working practices. The more that consumers are involved in determining how this is to be done, the more research programmes will learn from consumers and about how to work with them.

More success might be expected if research programmes embarking on collaborations approach well-networked consumers and provide them with information, resources and support to empower them in key roles for consulting their peers and prioritising topics. To be worthwhile, consultations should engage consumer groups directly and repeatedly in facilitated debate; when discussing health services research, more resources and time are required if consumers are drawn from groups whose main focus of interest is not health.

Barriers to consumer involvement include: poor representation of consumers; consumers’ unfamiliarity with research and research programmes’ unfamiliarity with consumers; negative attitudes and poor working relationships; difficulties in communication; and time constraints. These barriers can largely be overcome with good leadership, purposeful outreach to consumers, investing time and effort in good communication, training and support and thereby building good working relationships and building on experience.

Organised consumer groups capable of identifying research priorities need to find ways of introducing their ideas into research programmes. They should be aware that consumers making efforts to (re)design structures and procedures have had greater influence over research agendas. Consumers are particularly well placed to reflect on their experience of research agenda setting in order to build the evidence about their priorities and methods for involving them.

Text
mon815.pdf - Version of Record
Download (715kB)

More information

Published date: April 2004
Keywords: publishing, comparative study, role, time, interviews, empowerment, health-service, priorities, decision making, participation, england, review, consumers, literature, report, london

Identifiers

Local EPrints ID: 62007
URI: http://eprints.soton.ac.uk/id/eprint/62007
PURE UUID: dced1d27-cd4e-40aa-9b08-8e1037de25e0
ORCID for R. Milne: ORCID iD orcid.org/0000-0002-5117-4380

Catalogue record

Date deposited: 11 Sep 2008
Last modified: 16 Mar 2024 02:59

Export record

Contributors

Author: S. Oliver
Author: L. Clarke-Jones
Author: R. Rees
Author: R. Milne ORCID iD
Author: P. Buchanan
Author: J. Gabbay
Author: G. Gyte
Author: A. Oakley
Author: K. Stein

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×