Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions

Elwyn, Glyn; Crowe, Sally; Fenton, Mark; Firkins, Lester; Versnel, Jenny; Walker, Samantha; Cook, I.; Holgate, Stephen T.; Higgins, Bernard; Gelder, Colin

doi:10.1111/j.1365-2753.2009.01262.x

Cited by 96 publications

(104 citation statements)

References 10 publications

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“…The partnership between the British Thoracic Society and Asthma UK was the first formal PSP to complete the JLA process [7]. There have since been eight further completed PSPs, with the Ear, Nose and Throat specialty contributing two completed partnerships (balance and tinnitus).…”

Section: The Jlamentioning

confidence: 99%

Identifying and prioritizing unmet research questions for people with tinnitus: the James Lind Alliance Tinnitus Priority Setting Partnership

Hall¹,

Mohamad²,

Firkins³

et al. 2013

Clinical Investigation

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Tinnitus represents a major burden of disability, yet there is scant evidence for effective management strategies and a lack of clinical trials to formally test even some of the most commonly used drugs and medical devices. The James Lind Alliance gives a voice to patients and clinicians to identify and prioritize important clinical research questions concerning treatment uncertainties. This article describes the initiative conducted by the Tinnitus Priority Setting Partnership; how it was set up, what the consultation process was, and how the top ten research priorities were identified. For each priority, we recommend a research strategy; either calling for a systematic review or appropriate clinical study. We promote these as topics for commissioned research and as priority areas to encourage researcher-led funding applications.

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Section: The Jlamentioning

confidence: 99%

Identifying and prioritizing unmet research questions for people with tinnitus: the James Lind Alliance Tinnitus Priority Setting Partnership

Hall¹,

Mohamad²,

Firkins³

et al. 2013

Clinical Investigation

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“…For example, ‘ What are the adverse effects associated with long-term use of short- and long-acting bronchodilators; inhaled and oral steroids; and combination and additive therapies in children? ’ 83. Cost-effectiveness was prioritised in three studies 14 43 73.…”

Section: Resultsmentioning

confidence: 99%

Research priority setting in childhood chronic disease: a systematic review

et al. 2018

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Research priority setting activities in paediatric chronic disease cover many discipline areas and have elicited a broad range of topics. However, child/caregiver involvement is uncommon, and the methods often lack clarity. A systematic and explicit process that involves patients and families in partnership may help to inform a more patient and family-relevant research agenda in paediatric chronic disease.

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“…This sample size was estimated on the basis of previous James Lind Alliance PSPs 438 and determined by the time frame available for the vitiligo PSP. Data from all stages were stored and analysed in Microsoft Access ® 2007 (Microsoft Corporation, Redmond, WA, USA) and processed by the Steering Group members.…”

Section: Methodsmentioning

confidence: 99%

A programme of research to set priorities and reduce uncertainties for the prevention and treatment of skin disease

Kim

Batchelor

Bath‐Hextall

et al. 2016

Programme Grants Appl Res

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Programme Grants for Applied ResearchISSN 2050-4322 (Print) ISSN 2050-4330 (Online) This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: nihredit@southampton.ac.ukThe full PGfAR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/pgfar. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Programme Grants for Applied Research journalReports are published in Programme Grants for Applied Research (PGfAR) if (1) they have resulted from work for the PGfAR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. Programme Grants for Applied Research programmeThe Programme Grants for Applied Research (PGfAR) programme, part of the National Institute for Health Research (NIHR), was set up in 2006 to produce independent research findings that will have practical application for the benefit of patients and the NHS in the relatively near future. The Programme is managed by the NIHR Central Commissioning Facility (CCF) with strategic input from the Programme Director.The programme is a national response mode funding scheme that aims to provide evidence to improve health outcomes in England through promotion of health, prevention of ill health, and optimal disease management (including safety and quality), with particular emphasis on conditions causing significant disease burden.For more information about the PGfAR programme please visit the website: http://www.nihr.ac.uk/funding/programme-grants-forapplied-research.htm This reportThe research reported in this issue of the journal was funded by PGfAR as project number RP-PG-0407-10177. The contractual start date was in September 2008. The final report began editorial review in April 2014 and was accepted for publication in April 2016. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, CCF, NETSCC, PGfAR or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, ...

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Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions

Cited by 96 publications

References 10 publications

Identifying and prioritizing unmet research questions for people with tinnitus: the James Lind Alliance Tinnitus Priority Setting Partnership

Identifying and prioritizing unmet research questions for people with tinnitus: the James Lind Alliance Tinnitus Priority Setting Partnership

Research priority setting in childhood chronic disease: a systematic review

A programme of research to set priorities and reduce uncertainties for the prevention and treatment of skin disease

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