Prioritization Series
Case study: A patient–clinician collaboration that identified and prioritized evidence gaps and stimulated research development

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Abstract

Objective

To assess the effect of a research prioritization partnership that aimed to influence the research agenda relating to urinary incontinence (UI).

Study Design and Setting

Research often neglects important gaps in existing evidence so that decisions must be made about treatments without reliable evidence of their effectiveness. In 2007–2009, a United Kingdom partnership of eight patient and 13 clinician organizations identified and prioritized gaps in the evidence that affect everyday decisions about treatment of UI. The top 10 prioritized research questions were published and reported to research funders in 2009. A year later, new research or funding applications relating to the prioritized topics were identified through reviews of research databases and consultation with funding organizations, elements of the research community, and organizations that participated in the partnership.

Results

Since dissemination of the prioritized topics, five studies are known to have been funded, three in development; five new systematic reviews are under way, one is being updated; five questions are under consideration by a national research commissioning body.

Conclusion

The partnership successfully developed and used a methodology for identification and prioritization of research needs through patient–clinician consensus. Prioritization through consensus can be effective in informing the development of clinically useful research.

Section snippets

Background

What is new?

  • Methods for the identification of research priorities through consensus of patients and clinicians working together are being developed. However, whether they have any effect upon research activity is unclear.

  • The James Lind Alliance Priority Setting Partnership on Urinary Incontinence successfully developed and employed a methodology for identification and prioritization of research needs by patient-clinician consensus.

  • It would appear from this assessment of its impact that

The methods of the JLA PSP on UI

In brief, the process involved five phases. In the first phase, 30 UK clinician and patient organizations whose area of interest included UI were identified through web searches and peer consultation and invited to participate. Eight patient and 13 clinician groups participated, including both large organizations, such as royal colleges and national patient charities, and small organizations with specific clinical interests.

In the second phase, participating organizations asked their members to

Results

For each of the prioritized questions in turn, information is presented about research that is known be in development or for which funding applications have been made.

Discussion and conclusions

The breadth of UI as a clinical area was reflected in the wide range of evidence needs included in the final list. Each prioritized question related to uncertainties about treatment and management strategies that have profound effects on quality of life and rehabilitation of those affected by UI, and yet little evidence exists to guide practice.

To identify new research activity in the wake of the JLA PSP on UI, this report has relied on searching of research databases and consultation with

Acknowledgments

Thanks are due to the patients and clinicians who submitted uncertainties, all the participating organizations and their representatives, Mark Fenton of DUETs, Sally Crowe of Crowe Associates, Patricia Atkinson of James Lind Alliance, Ron Marsh, the Cochrane Incontinence Review Group, Jude Frankau and Alexandra Greene, and Katherine Cowan.

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    Sources of funding and support: The costs of the James Lind Alliance (JLA) Priority Setting Partnership on urinary incontinence were supported in part by a grant from the Cochrane Collaboration’s Prioritization Fund and by the JLA, whose core funding is provided by the Medical Research Council and the Department of Health. The consultation processes were supported by the partner organizations. The authors have been supported by their respective academic institutions.

    Disclaimer: The views contained in the article are those of the authors and are necessarily shared by the funders or the participating organizations.

    Conflicts of interest: B.S.B. is an editor and author with the Cochrane Incontinence Group and a grant holder on studies funded by the Health Research Board of Ireland and by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) program. He is a voluntary member of the Board of Trustees of the Bladder & Bowel Foundation. A.M.G. was Coordinating editor of the Cochrane Incontinence Group until December 2007 and holds NIHR grants evaluating treatments of urinary incontinence. He is the Director of the NIHR Program Grants for Applied Research Program. C.M.A.G. is a Joint Coordinating Editor of the Cochrane Incontinence Review Group and an Investigator on studies funded by the NIHR HTA program and well being of women.

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