Patient and Public Involvement Within Orthopaedic Research

Owyang, Dean; Bakhsh, Ali; Brewer, David E.; Boughton, Oliver; Cobb, Justin P.

doi:10.2106/jbjs.20.01573

Cited by 15 publications

(13 citation statements)

References 18 publications

(30 reference statements)

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“…Furthermore, while the PhD project reflected upon in this perspective piece did not strictly pertain to a digital health innovation nor to a full translational research innovation, a predictive model was developed which was intended for use in the clinical setting for shared clinical decision-making in orthopaedics. Therefore, MGH’s involvement throughout the project was critical for in laying a solid foundation for the development of a clinically relevant digital health innovation [ 90 , 91 ] primed for translation into the clinical setting [ 27 ] in orthopaedics, which is a clinical discipline in which patient involvement is gaining recognition and appreciation [ 26 ].…”

Section: Discussionmentioning

confidence: 99%

Research Buddy partnership in a MD–PhD program: lessons learned

et al. 2023

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Background and aims There is increasing recognition of the importance of patient involvement in research. In recent years, there has also been growing interest in patient partnerships with doctoral studies students. However, it can be difficult to know where to start and how to go about such involvement activities. The purpose of this perspective piece was to share experiential insight of the experience of a patient involvement program such that others can learn from this experience. Body This is a co-authored perspective piece centred on the experience of MGH, a patient who has had hip replacement surgery, and DG, a medical student completing a PhD, participating in a Research Buddy partnership over the course of over 3 years. The context in which this partnership took place was also described to facilitate comparison with readers’ own circumstances and contexts. DG and MGH met regularly to discuss, and work together on, various aspects of DG’s PhD research project. Reflexive thematic analysis was conducted on reflections from DG and MGH regarding their experience in the Research Buddy program to synthesise nine lessons which were then corroborated with reference to published literature on patient involvement in research. These lessons were: learn from experience; tailor the program; get involved early; embrace uniqueness; meet regularly; build rapport; ensure mutual benefit; broad involvement; regularly reflect and review. Conclusions In this perspective piece, a patient and a medical student completing a PhD reflected upon their experience co-designing a Research Buddy partnership within a patient involvement program. A series of nine lessons was identified and presented to inform readers seeking to develop or enhance their own patient involvement programs. Researcher-patient rapport is foundational to all other aspects of the patient’s involvement.

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Section: Discussionmentioning

confidence: 99%

Research Buddy partnership in a MD–PhD program: lessons learned

et al. 2023

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“…This corroborates findings from previous studies on reporting of patient involvement and/or engagement. [12,13,16]…”

Section: Discussionmentioning

confidence: 99%

“…This corroborates findings from previous studies on reporting of patient involvement and/or engagement. [12,13,16] Due to this incomplete reporting, coding according to the GRIPP2-SF categories was a challenge: the sparseness of reporting in many of the publications meant that these categories were relatively broad and overlapping. For example, a statement such as "patients helped with the identification of meaningful outcomes" could describe the method (i.e., focusing on the process) or the results (i.e., identifying outcomes) of patient involvement.…”

Section: Discussionmentioning

confidence: 99%

“…We are aware of several studies that investigated the rate and quality of reporting [13] or critically appraised patient involvement in specific domains of clinical research. [12,[14][15][16] Overall, these previous assessments identified very few publications that reported patient involvement and/or engagement and reporting quality was sub-optimal (e.g., 0.4% of the sample described the active involvement of patients in orthopaedic research [16]). Jones et al [15] also included studies which had patient involvement as primary focus, such as prioritizing research topics.…”

Section: Introductionmentioning

confidence: 99%

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

Weschke

Franzen

Sierawska

et al. 2022

Preprint

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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

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“…We have identi ed four studies that have examined the extent to which PPI has been integrated into research (Jones et al, 2015;Owyang et al, 2021;Patel et al, 2021;Price, Schroter, et al, 2018). Owyang et al (2021) report a systematic review examining the prevalence and quality of PPI in randomised controlled trials in orthopaedics. The authors reviewed 475 studies and identi ed two trials where there was some evidence of meaningful PPI.…”

Section: Introductionmentioning

confidence: 99%

Reporting of Patient And Public Involvement (PPI) In Clinical Trials Published In Three Leading Nursing Science Journals: A Scientiometric Study

Gray

Brasier

2021

Preprint

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Background: Patient and Public Involvement (PPI) in identifying research questions, designing trials, and collecting, interpreting, and publishing results may positively affect the relevance, quality and impact of research. The extent of patient and public involvement in nursing clinical trials has not been previously studied. Methods: A Scientiometric study of PPI in clinical trials published in three leading nursing science journals. Randomised controlled clinical trials published in the International Journal of Nursing Studies, the Journal of Clinical Nursing, and the Journal of Advanced Nursing between January and April 2021 were identified by searching the SCOPUS database. Journal author guidelines were also review. Data were extracted against the five items of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) reporting checklist. Results: None of the journals required authors to include a patient and public involvement statement in submitted papers or to thank participants in the acknowledgement section of the paper. We included 23 randomised controlled clinical trials, of which half were conducted in Europe and 12 were supported by external grants. Authors thanked participants in the acknowledgement section often (43%) trials. There was no statement or evidence of patient and public involvement in any of the included trials.Conclusion: There was no evidence of PPI in trials published in nursing science journals. Researchers, funders, and journals need to collaborate to change cultural expectations to ensure that PPI is an emended part of clinical research.

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Patient and Public Involvement Within Orthopaedic Research

Cited by 15 publications

References 18 publications

Research Buddy partnership in a MD–PhD program: lessons learned

Research Buddy partnership in a MD–PhD program: lessons learned

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

Reporting of Patient And Public Involvement (PPI) In Clinical Trials Published In Three Leading Nursing Science Journals: A Scientiometric Study

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