Journals Library

An error has occurred in processing the XML document

An error occurred retrieving content to display, please try again.

Page not found (404)

Sorry - the page you requested could not be found.

Please choose a page from the navigation or try a website search above to find the information you need.

{{metadata.Title}}

{{metadata.Headline}}

{{author}}{{author}}{{($index < metadata.AuthorsAndEtalArray.length-1) ? ',' : '.'}}

An error has occurred in processing the XML document

An error has occurred in processing the XML document

{{metadata.Journal}} Volume: {{metadata.Volume}}, Issue: {{metadata.Issue}}, Published in {{metadata.PublicationDate | date:'MMMM yyyy'}}

https://doi.org/{{metadata.DOI}}

Citation: {{author}}{{ (($index < metadata.AuthorsArray.length-1) && ($index <=6)) ? ', ' : '' }}{{(metadata.AuthorsArray.length <= 6) ? '.' : '' }} {{(metadata.AuthorsArray.length > 6) ? 'et al.' : ''}} {{metadata.Title}}. {{metadata.JournalShortName}} {{metadata.PublicationDate | date:'yyyy'}};{{metadata.Volume}}({{metadata.Issue}})

Report Content

The full text of this issue is available as a PDF document from the Toolkit section on this page.

The full text of this issue is available as a PDF document from the Toolkit section on this page.

Abstract

OBJECTIVES

To 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. Also to identify the barriers to, and facilitators of, meaningful participation by consumers in research identification and prioritisation.

DATA SOURCES

Electronic databases and interviews with UK consumers and research programme managers.

REVIEW METHODS

A framework was devised 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. Context (institutional, geographical and historical setting) and underpinning theories were considered as important variables for analysing examples of consumer involvement. This innovative framework was then applied to the review data from reports selected for inclusion and interviews.

RESULTS

The study 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. Detailed reports of 87 specific examples were identified. 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

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. Further 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. 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 also need to find ways of introducing their ideas into research programmes. Further research is suggested to develop and evaluate different training methods, information and education and other support for consumers and those wishing to involve them; to address the barriers to consumers' ideas influencing research agendas; and to carry out prospective comparative studies of different methods for involving consumers. Research about collective decision-making would also be further advanced by addressing the processes and outcomes of consensus development that involves consumers.

Abstract

OBJECTIVES

To 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. Also to identify the barriers to, and facilitators of, meaningful participation by consumers in research identification and prioritisation.

DATA SOURCES

Electronic databases and interviews with UK consumers and research programme managers.

REVIEW METHODS

A framework was devised 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. Context (institutional, geographical and historical setting) and underpinning theories were considered as important variables for analysing examples of consumer involvement. This innovative framework was then applied to the review data from reports selected for inclusion and interviews.

RESULTS

The study 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. Detailed reports of 87 specific examples were identified. 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

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. Further 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. 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 also need to find ways of introducing their ideas into research programmes. Further research is suggested to develop and evaluate different training methods, information and education and other support for consumers and those wishing to involve them; to address the barriers to consumers' ideas influencing research agendas; and to carry out prospective comparative studies of different methods for involving consumers. Research about collective decision-making would also be further advanced by addressing the processes and outcomes of consensus development that involves consumers.

If you would like to receive a notification when this project publishes in the NIHR Journals Library, please submit your email address below.

 

Responses to this report

No responses have been published.

 

If you would like to submit a response to this publication, please do so using the form below:

Comments submitted to the NIHR Journals Library are electronic letters to the editor. They enable our readers to debate issues raised in research reports published in the Journals Library. We aim to post within 2 working days all responses that contribute substantially to the topic investigated, as determined by the Editors.

Your name and affiliations will be published with your comment.

Once published, you will not have the right to remove or edit your response. The Editors may add, remove, or edit comments at their absolute discretion.

By submitting your response, you are stating that you agree to the terms & conditions