Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

Jones, Julia; Cowe, Marion; Marks, Sue Anne; McAllister, Tony; Mendoza, Alex; Ponniah, Carole; Wythe, Helena; Mathie, Elspeth

doi:10.1186/s40900-021-00295-w

Cited by 36 publications

(37 citation statements)

References 48 publications

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“…via their affiliation, disclosures, contribution statements in the article or conducting internet searches on listed authors) is time-consuming and may underestimate the number of patient-authored publications, as well as limiting the scope of research that should be undertaken. Some researchers have made the effort to contact lead authors directly to ask whether any patients were co-authors [ 31 ]. While this method should provide definitive answers, it would also be time-consuming, especially for large-scale studies.…”

Section: Recommendations To Accelerate Research Metrics Awareness And...mentioning

confidence: 99%

“…Patient advocates are now being advised to include ‘Patient Author’ in their affiliations [ 28 ], and some publishers and researchers have started to raise awareness of its use [ 32 ]. Researchers have recently called for the Guideline for Reporting Involvement of Patients and the Public (GRIPP2) reporting checklist to include a section to state whether the research included patient and public co-authors [ 31 ].…”

Section: Recommendations To Accelerate Research Metrics Awareness And...mentioning

confidence: 99%

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Hidden in plain sight? Identifying patient-authored publications

Oliver¹,

Lobban²,

Dormer

et al. 2022

Res Involv Engagem

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Background Patient advocates are increasingly authoring peer-reviewed publications that could enhance patient care and understanding of the lived experience. Although patient authorship may be seen as an innovation in the peer-reviewed publication environment and some may not be aware of or accept patient authorship, we know patient-authored publications exist. However, identifying patient-authored publications is often challenging and time-consuming. Main body In this commentary, we propose a definition for a patient author and patient-authored publications. We outline factors driving the increase in patient authorship, including patient interest, recognition of the value of including the patient voice and major funders recognising the importance of involving patient advocates in research. Evidence and experience-based guidance on patient authorship is emerging, and we highlight practical guidance for patient advocates on authoring peer-reviewed publications. To gain a better understanding of patient authorship, an efficient method is needed to identify patient-authored publications. A dataset on patient-authored publications could be used for a range of quantitative and qualitative research studies. The affiliation search function in PubMed can provide an easy, and reproducible way to identify a dataset of patient-authored publications in the international peer-reviewed literature, but only if patient authors include a standard metatag, (e.g. Patient Author) as one of their listed affiliations, combined with other affiliations as appropriate. From 2020 to 2021, there was a nine-fold increase in patient-authored publications in PubMed identified using the Patient Author tag. We recognize that terminology can be contentious and some authors may prefer alternative metatags. Further efforts are required to gain consensus on a suitable, standard metatag or set of metatags to use to show the true extent of patient authorship. Conclusion Patient authorship is not only legitimate, but it also exemplifies the principles of diversity, equity and inclusion. Stakeholders in the publication community need to review their policies and procedures to identify and address barriers to patient authorship. Patient advocates, funders, researchers and publishers could all help to promote awareness and acceptance of patient authorship and the merits of using a standard metatag or set of metatags, so that patient-authored publications are no longer hidden in plain sight.

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Section: Recommendations To Accelerate Research Metrics Awareness And...mentioning

confidence: 99%

Section: Recommendations To Accelerate Research Metrics Awareness And...mentioning

confidence: 99%

Hidden in plain sight? Identifying patient-authored publications

Oliver¹,

Lobban²,

Dormer

et al. 2022

Res Involv Engagem

View full text Add to dashboard Cite

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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%

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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“…When planning the study, we met with the PP face to face at a network event and after that we kept contact digitally and through email. We used the Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) checklist [41,42] as a guide when reporting the PP´s involvement in our study (Appendix 4).…”

Section: Patient Partnermentioning

confidence: 99%

Empowerment and enablement as predictors of change in health-related quality of life among patients participating in a Supported OsteoArthritis Self-Management Programme – a prospective observational study

Åkesson

Sundén

Stigmar

et al. 2022

Preprint

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Background: Osteoarthritis is a leading cause of disability worldwide. Current treatment supports coping strategies to improve health-related quality of life (HRQoL). The need to predict response to treatment has been raised to personalise care. This study aims to examine change in HRQoL from baseline to three and nine months follow-up after participating in a Supported OsteoArthritis Self-Management Programme (SOASP) and to examine if empowerment and/or enablement could predict change in HRQoL among patients participating in a SOASP. Methods: Patients participating in a SOASP were recruited consecutively between April 2016 and June 2018. The EQ-5D was used to measure HRQoL, the SWE-RES-23 23 (score range 1–5) to measure empowerment and the PEI (score range 0–12) to measure enablement. The instruments were answered before (EQ-5D, SWE-RES-23) and after (EQ-5D, SWE-RES-23, PEI) the SOASP. A patient partner was engaged to enhance the patient perspective. Changes in outcome were examined with paired sample t-test and standardized effect sizes (Cohen´s d). Potential predictive variables were tested with multiple linear regression analysis. Results: In total, 143 patients participated in baseline measurement. The mean EQ-5D-5L index score increased significantly from baseline to three months corresponding to a standardised effect size (Cohen´s d) of d=.43, 95 % CI [.24, .63] (n=109), and from baseline to nine months d=.19, 95 % CI [.01, .37] (n=119). The average EQ VAS score increased significantly from baseline to three months corresponding to a standardised effect size of d=.26, 95 % CI [.07, .45] (n=109), and from baseline to nine months d=.18, 95 % CI [.00, .36] (n=119). Neither the SWE-RES-23 nor the PEI at three months follow-up or the change in the SWE-RES-23 score from baseline to three months follow-up predicted change in either EQ-5D-5L index (p>.05) or the EQ VAS (p>.05). Conclusions: Health-related quality of life increased after participating in a SOASP. Empowerment and enablement as measured with the SWE-RES-23 and the PEI respectively could not predict change in HRQoL among patients participating in a SOASP. Trial registration: ClinicalTrials.gov. Identification number: NCT 02974036. First registration 28/11/2016, retrospectively registered.

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Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

Cited by 36 publications

References 48 publications

Hidden in plain sight? Identifying patient-authored publications

Hidden in plain sight? Identifying patient-authored publications

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

Empowerment and enablement as predictors of change in health-related quality of life among patients participating in a Supported OsteoArthritis Self-Management Programme – a prospective observational study

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