The value of stakeholder, patient and public contributions and knowledge of lived experience to the conduct and interpretation of empirical findings from synthesised evidence.

Article type
Authors
Babatunde O1, Bishop A1, Rhodes C1, Cottrell E1, van der Windt D1
1School of Primary, Community and Social Care; Keele University
Abstract
Background: Robust evidence synthesis, including Network Meta-Analysis (NMA), is a fundamental tool for clinical decision and health policy making. However, integration of patient values with clinical experience and best available research information is not always apparent at the core of current evidence based practice.
Objectives: This project explores novel approaches to patient and public involvement and engagement (PPIE); contribution of lived experiences to the conduct and interpretation of evidence from an NMA and a large systematic review.
Methods: The two studies used to explore the value of PPIE contributions to the conduct of evidence synthesis followed established guidance and systematic review methodology. First, an NMA (80 trials, 4,533 patients, 19 treatments) was conducted to determine the comparative effectiveness of treatments for improving pain and function of patients with subacromial shoulder conditions (SSC). PPIE representatives with SSC (n=5) participated in a discussion regarding management of SSC. This included the process of shared decision making (if any), treatment outcomes and factors which may have influenced outcomes of treatment. The group were then invited to rate the effectiveness of treatments and also rank the likelihood of benefit from each treatment (on a scale of 1-5) based on their own personal lived experiences. Random-effects NMA and cumulative ranking of interventions was undertaken by a reviewer without knowledge of the details of PPIE contributions.
Second, a systematic review (26 studies, 120,276 000 patients) and narrative synthesis of the clinical and socio-economic outcomes of musculoskeletal (MSK) triage/direct access services was conducted. PPIE representatives with MSK pain (n=8) were supported to read and assimilate a sample paper. They were encouraged to highlight items they felt were relevant for data extraction and discussed important issues related to access to care for MSK pain based on their own lived experience.
Results: PPIE conventions highly correlated with/predicted empirical findings from the NMA which found small to moderate effects for most treatment options for SSCs, with exercise ranked highly for long-term benefit. PPIE involvement in the MSK triage/direct access review resulted in a more comprehensive data-extraction instrument. It provided a basis for within data exploration of potential factors (e.g. socio-demographics, and health literacy) that may be associated with long term health and socio-economic gains due to MSK triage/direct access.
Conclusions: Involvement of PPIE improved the robustness of the review process (specifically data-extraction and interpretation of results) and also validated empirical findings from the review. The project draws on PPIE involvement in bridging the research to practice gap, and shared decision making as a core principle of evidence-based research and practice.
As part of study advisory group, clinicians and relevant stakeholders also contributed to the interpretation of evidence from both studies.
ID:CRD42018085978/42014009788