Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy

Abstract

ObjectivesTo evaluate the extent and quality of patient involvement reporting in examples of current practice in health research.DesignMixed-methods study. We used a targeted search strategy across three cohorts to identify health research publications that reported patient involvement: original research articles published in 2019 in the British Medical Journal (BMJ), articles listed in the Patient-Centered Outcomes Research Institute (PCORI) database (2019), and articles citing the GRIPP2 (Guidance for Reporting Involvement of Patients and Public) reporting checklist for patient involvement or a critical appraisal guideline for user involvement. Publications were coded according to three coding schemes: ‘phase of involvement’, the GRIPP2-Short Form (GRIPP2-SF) reporting checklist and the critical appraisal guideline.Outcome measuresThe phase of the study in which patients were actively involved. For the BMJ sample, the proportion of publications that reported patient involvement. The quality of reporting based on the GRIPP2-SF reporting guideline. The quality of patient involvement based on the critical appraisal guideline. Quantitative and qualitative results are reported.ResultsWe included 86 publications that reported patient involvement. Patients were most frequently involved in study design (90% of publications, n=77), followed by study conduct (71%, n=61) and dissemination (42%, n=36). Reporting of patient involvement was often incomplete, for example, only 40% of publications (n=34) reported the aim of patient involvement. While the methods (57%, n=49) and results (59%, n=51) of involvement were reported more frequently, reporting was often unspecific and the influence of patients’ input remained vague. Therefore, a systematic assessment of the quality and impact of patient involvement according to the critical appraisal guideline was not feasible across samples.ConclusionsAs patient involvement is increasingly seen as an integral part of the research process and requested by funding bodies, it is essential that researchers receive specific guidance on how to report patient involvement activities. Complete reporting builds the foundation for assessing the quality of patient involvement and its impact on research.

Advisory groups in realist reviews: Systematically mapping current research and recommendations for practice

“…Similarly, the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist was developed to provide guidance for reporting PPI in health and social care research [140]. While adherence to reporting GRIPP and GRIPP2 vary, encouraging requirements from journals and funding organizations can help to improve comprehensive and quality reporting [141]. Initiatives such as the EQUATOR network promote the availability and standardized use of transparent and accurate reporting guidelines to enhance the value and reliability of published research [142].…”

Reporting participatory methods and author positionality in autism

“…Moreover, many articles coded in this analysis were found to contain insufficient information on who was involved, and in which activities, to allow for categorisation. Thus, our existing approach to reporting community involvement could be improved, specifically by providing more detail on what reporting is expected and allowing additional word count to authors completing this section (Weschke et al, 2023). This second element is crucial.…”