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

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

  • Sarah Weschke - (Author)
  • Delwen Louise Franzen - (Author)
  • Anna Karolina Sierawska - , Technical University of Munich (Author)
  • Lea-Sophie Bonde - (Author)
  • Daniel Strech - (Author)
  • Susanne Gabriele Schorr - (Author)

Abstract

Objectives To evaluate the extent and quality of patient involvement reporting in examples of current practice in health research. Design Mixed-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 measures The 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. Results We 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. Conclusions As 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.

Details

Original languageEnglish
Article numbere064170
Number of pages10
JournalBMJ open
Volume13(2023)
Issue number1
Publication statusPublished - 20 Jan 2023
Peer-reviewedYes
Externally publishedYes

External IDs

Scopus 85147000491
PubMed 36669835
WOS 001003106500011
Mendeley 708b48d4-2340-3172-a2d1-1f85802e5719

Keywords

DFG Classification of Subject Areas according to Review Boards

Subject groups, research areas, subject areas according to Destatis

ASJC Scopus subject areas

Keywords

  • Checklist, Humans, Patient Participation/methods, Publications, Research Design, Qualitative research, Statistics & research methods, Medical ethics, Statistics and research methods

Library keywords