Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership

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Abstract

Objective

The James Lind Alliance (JLA) offers a method for better aligning health and care agenda’s with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw attention to crucial lessons learnt when establishing such a shared research agenda.

Key arguments

Having specific strategies and plans in place for maximising dialogic processes in a PSP can help facilitate and maintain trust, innovation and equal inclusion.

Conclusion

Eight lessons learnt have been formulated, based on our observations and reflections on the JLA PSP and our expertise on patient participation and participatory research.

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Most cited references 13

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How to increase value and reduce waste when research priorities are set.

Iain C. Chalmers, Michael B Bracken, Ben Djulbegovic … (2014)

The increase in annual global investment in biomedical research--reaching US$240 billion in 2010--has resulted in important health dividends for patients and the public. However, much research does not lead to worthwhile achievements, partly because some studies are done to improve understanding of basic mechanisms that might not have relevance for human health. Additionally, good research ideas often do not yield the anticipated results. As long as the way in which these ideas are prioritised for research is transparent and warranted, these disappointments should not be deemed wasteful; they are simply an inevitable feature of the way science works. However, some sources of waste cannot be justified. In this report, we discuss how avoidable waste can be considered when research priorities are set. We have four recommendations. First, ways to improve the yield from basic research should be investigated. Second, the transparency of processes by which funders prioritise important uncertainties should be increased, making clear how they take account of the needs of potential users of research. Third, investment in additional research should always be preceded by systematic assessment of existing evidence. Fourth, sources of information about research that is in progress should be strengthened and developed and used by researchers. Research funders have primary responsibility for reductions in waste resulting from decisions about what research to do. Copyright © 2014 Elsevier Ltd. All rights reserved.

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Patient participation as dialogue: setting research agendas.

Tineke Abma, Jacqueline Broerse (2010)

Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue. We conducted seven case studies between 2003 and 2007 to develop and validate a Dialogue Model for patient participation in health research agenda setting. The case studies related to spinal cord injury, neuromuscular diseases, renal failure, asthma/chronic obstructive pulmonary disease, burns, diabetes and intellectual disabilities. The Dialogue Model is grounded in participatory and interactive approaches and has been adjusted on the basis of pilot work. It has six phases: exploration; consultation; prioritization; integration; programming; and implementation. These phases are discussed and illustrated with a case description of research agenda setting relating to burns. The dialogue model appeared relevant and feasible to structure the process of collaboration between stakeholders in several research agenda setting processes. The phase of consultation enables patients to develop their own voice and agenda, and prepares them for the broader collaboration with other stakeholder groups. Challenges include the stimulation of more permanent changes in research, and institutional transitions.

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The Effectiveness of Nominal, Delphi, and Interacting Group Decision Making Processes.

A. Van De, A Delbecq (1974)

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Author and article information

Journal

Journal ID (nlm-ta): BMJ Open

Journal ID (iso-abbrev): BMJ Open

Journal ID (hwp): bmjopen

Journal ID (publisher-id): bmjopen

Title: BMJ Open

Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )

ISSN (Electronic): 2044-6055

Publication date Collection: 2022

Publication date (Electronic): 19 May 2022

Volume: 12

Issue: 5

Electronic Location Identifier: e059006

Affiliations

[1]departmentMedical Humanities , University Medical Center, Utrecht University , Utrecht, The Netherlands

Author notes

[Correspondence to ] Dr Karin Rolanda Jongsma; k.r.jongsma@ 123456umcutrecht.nl

Author information

Karin Rolanda Jongsma http://orcid.org/0000-0001-8135-6786

Article

Publisher ID: bmjopen-2021-059006

DOI: 10.1136/bmjopen-2021-059006

PMC ID: 9125715

PubMed ID: 35613776

SO-VID: 4ea16224-6899-4dd5-b631-e7d533a12e06

License:

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

History

Date received : 04 November 2021

Date accepted : 10 May 2022

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special-feature unlocked

ScienceOpen disciplines: Medicine

Keywords: health policy,medical ethics,paediatric rheumatology,ethics (see medical ethics),quality in health care

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ScienceOpen disciplines: Medicine

Keywords: health policy, medical ethics, paediatric rheumatology, ethics (see medical ethics), quality in health care

Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership

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Abstract

Objective

Key arguments

Conclusion

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Climate Change and Human Health

Most cited references 13

How to increase value and reduce waste when research priorities are set.

Patient participation as dialogue: setting research agendas.

The Effectiveness of Nominal, Delphi, and Interacting Group Decision Making Processes.

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Journal

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Author notes

Author information

Article

History

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