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.
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', or 'unanswered questions', about the effects of pressure ulcer interventions. JLAPUP identified a mismatch between the nature and quality of RCTs in pressure ulcer prevention and treatment and the kind of research evidence desired by patients or service users, carers and health professionals. Results and methods have been reported fully elsewhere. The consultative and deliberative methods used to establish health research priorities in PSPs are fundamentally interpretive. PSPs are therefore an arena in which 'hard' evidence-informed ideals meet 'soft' participatory practices. This article provides an account of the challenges faced in one particular PSP. We explain the rationale for the approaches taken, difficulties faced and the limitations at each stage, because these aspects are particularly under-reported. The JLAPUP case is used to identify possible areas for evaluation and reporting across PSPs.
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.