Reporting of patient involvement: A mixed-methods analysis of current practice in health research publications

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: publications published in The BMJ, publications listed in the PCORI database, and publications citing the GRIPP2 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-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 short form reporting guideline. The quality of patient involvement based on the critical appraisal guideline. Quantitative and qualitative results are reported.ResultsWe included 87 publications that reported patient involvement. Patients were most frequently involved in study design (90% of publications, n=78), followed by study conduct (70%, n=61), and dissemination (40%, n=35). Reporting of patient involvement was often incomplete, e.g., only 39% of publications (n=34) reported the aim of patient involvement. While the methods (56%, n=49) and results (59%, n=51) of involvement were reported more frequently, qualitative analyses showed that 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.PROTOCOLThe protocol was published on the Open Science Framework: https://osf.io/vntgu/STRENGTHS AND LIMITATIONSA targeted search strategy was used to identify examples of patient involvement reporting in a variety of publication types and study designs in health researchA mixed-methods approach allowed for an analysis of both the completeness and quality of patient involvement reportingIn this study, we coded statements reporting on patient involvement in 87 health research publications that may be adapted for further useReporting of patient involvement was insufficiently detailed to allow for a systematic assessment of the quality of patient involvement

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

“…In contrast, in the PCORI and Citation samples, we often found very detailed descriptions of patient involvement, including the nature of performed tasks, concrete examples of its influence on the study and critical reflections (see Weschke et al 21 and table 2). In many cases, these descriptions were provided in additional documents.…”

“…Most frequently applied exclusion criteria were ‘no patient involvement’ and ‘no research publication’. We included 35 additional documents, which provided further information on patient involvement described in the publications 21…”

“…Patients were most frequently involved in the study design (90% of included publications, n=77), followed by study conduct (71%, n=61) and dissemination (42%, n=36) (table 1 and 21). In 17% (n=15) of the publications, patients were involved in formulating the research question and in 31% (n=27) in defining outcome measures.…”

“…Between 13% (n=4, BMJ sample) and 77% (n=10, Citation sample) of the publications reported the aim of patient involvement (table 2 and 21). The predominant code for aim identified in our sample was ensuring that patients’ perspectives were taken into account.…”

“…The critical appraisal tool6 focuses on the quality and impact of user involvement in research (table 3 and 21). Specific appraisal criteria were rarely reported, such as discussing the level of involvement (7%, n=6), considering whether findings were disseminated appropriately to recipients (7%, n=6) or conducting a formal evaluation (6%, n=5).…”