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Madden M, Morley R. Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership. Res Involv Engagem. 2016;2:12doi: 10.1186/s40900-016-0026-y.
Madden, M., & Morley, R. (2016). Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership. Research involvement and engagement, 212. https://doi.org/10.1186/s40900-016-0026-y
Madden, Mary, and Morley, Richard. "Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership." Research involvement and engagement vol. 2 (2016): 12. doi: https://doi.org/10.1186/s40900-016-0026-y
Madden M, Morley R. Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership. Res Involv Engagem. 2016 Apr 02;2:12. doi: 10.1186/s40900-016-0026-y. eCollection 2016. PMID: 29062513; PMCID: PMC5611574.
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Res Involv Engagem. 2016 Apr 02;2:12. doi: 10.1186/s40900-016-0026-y. eCollection 2016.

Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership.

Research involvement and engagement

Mary Madden, Richard Morley

Affiliations

  1. School of Healthcare, Faculty of Medicine and Health, University of Leeds, 2.19, Baines Wing, Leeds, LS2 9JT UK.
  2. Consumer Network Coordinator, Cochrane, St Albans House, 57-59 Haymarket, London, SW1Y 4QX UK.

PMID: 29062513 PMCID: PMC5611574 DOI: 10.1186/s40900-016-0026-y

Abstract

PLAIN ENGLISH SUMMARY: The James Lind Alliance (JLA) brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise shared uncertainties about the effects of treatment. The JLA emerged from the evidence-informed healthcare movement to address a concern that the research being carried out on treatment effectiveness is not that of most importance to patients and health professionals. In the JLA PSPs, 'hard' evidence-informed ideals meet 'soft' participatory practices. This article explores the challenges of putting co-production methods into practice by reflecting on the methods used by the JLA Pressure Ulcer PSP (JLAPUP). The JLA principles are transparency, inclusivity and avoiding waste in research. This means paying the same close critical attention to how PSPs are designed and run, as is desired in the health research which the JLA seeks to influence. JLAPUP showed that it was possible to work in partnership in a field where patients are often elderly, immobile, unrepresented and particularly unwell, many of whom are living with more than one long term condition. However, for those unfamiliar with it, 'uncertainty' was a difficult term to get to grips with. Also, it was harder for some people than others to take part and to have their voices heard and understood. In keeping with other PSPs, JLAPUP found that the nature and quality of research into pressure ulcer prevention and treatment did not reflect the priorities of those who took part.

ABSTRACT: ᅟ.

BACKGROUND: Studies identifying a mismatch between the priorities of academics and clinicians and those of people with direct experience of a health condition pose a challenge to the assumption that professional researchers can represent the interests of patients and the public in setting priorities for health research. The James Lind Alliance (JLA) brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise shared uncertainties about the effects of treatment. There is no formal evaluation yet to examine the different approaches used by individual PSPs and the impact these methods have on the quality of the partnership and subsequent outputs. There is no gold standard method for health research topic identification and priority setting and reporting on public involvement in this area is predominantly descriptive rather than evaluative.

METHODS AND FINDINGS: The JLA Pressure Ulcer PSP (JLAPUP) was developed and worked between 2009 and 2013 to identify and prioritise the top 10 'uncertainties'

CONCLUSION: Engaging people with very different health and life experiences in the complexities of health science based discussions of uncertainty is challenging. This is particularly the case when engaging groups routinely excluded from participating in health research, for example, older people with multiple comorbidities. The JLA principles of transparency, inclusivity and avoiding waste in research require paying close critical attention to PSP methodology, including full evaluation and reporting of PSP processes and outcomes. Assessing the impact of PSPs is contingent on the decision making processes of commissioners and funders.

Keywords: Evidence-informed healthcare; PPI methodology; Research priority setting; The James Lind Alliance; Value in research; Wound care

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