Reporting of patient and public involvement and engagement (PPIE) in clinical trials published in nursing science journals: a descriptive study

Gray, Richard; Brasier, Catherine; Zirnsak, Tessa-May; Ng, Ashley

doi:10.1186/s40900-021-00331-9

Cited by 13 publications

(13 citation statements)

References 11 publications

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“…Second, the online survey in Stage 1 (Orientation) allowed for detailed insights into the status quo of PPIE in pediatric oncology across Europe to understand knowledge, approaches, and attitude of both HCP and patients equally. In line with prior research looking into the currently practiced degree of involvement, 9,18,21 extensive deficits in the establishment of PPIE came to light. Thereby significantly more patients stated to never have been involved in any type of scientific research while HCPs claimed to involve patients significantly more in the later research steps.…”

Section: Discussionmentioning

confidence: 64%

“…The derived workflow (Figure1) can therefore serve as framework and practical guidance for future projects aiming at implementing PPIE, since it highlights necessary elements of participation, engagement, and involvement and allows for the individual adaptation to the specific circumstances of future research.Second, the online survey in Stage 1 (Orientation) allowed for detailed insights into the status quo of PPIE in pediatric oncology across Europe to understand knowledge, approaches, and attitude of both HCP and patients equally. In line with prior research looking into the currently practiced degree of involvement,9,18,21 extensive deficits in the establishment of PPIE came to light. Thereby significantly more patients stated to never have been involved in any type of scientific research while HCPs claimed to involve patients significantly more in the later research steps.…”

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confidence: 55%

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Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

et al. 2023

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Background Public and Patient Involvement and Engagement (PPIE) in research is still a poorly understood and infrequently practiced concept, although the literature stresses clear benefits for quality of care and research as well as patient satisfaction and empowerment. Aim The presently described project aimed at using different PPIE methods to evaluate the current state of knowledge about and attitude toward PPIE in research among different stakeholders of pediatric oncology in Europe. Based on the findings a tailored training tool directed toward the different stakeholders will be designed. Methods and Results An interdisciplinary steering group developed a mixed‐method 3‐stage process to (1) investigate the current knowledge and attitudes about PPIE using a Europe‐wide cross‐sectional online survey directed toward health care professionals (n = 134) and the patient group (patients, survivors, family members, …) (n = 168). The results were analyzed quantitatively, focusing on group comparisons (t‐tests, X2 tests). (2) In a live workshop with n = 36 participants (HCPs and patient group) dual moderation teams (HCPs and patient experts) guided the exploration of effective ways for practicing PPIE. Despite classifying PPIE as relevant, both HCPs and patients indicated a low level of knowledge about the concept and terminology (patients: t(334) = −2.82, p = .004; HCPs: t(270) = −2.88, p = .004). While HCPs assumed to already be involving patients in many research areas, this was not perceived by the patient group (X2 (1, N = 304) = 42.70, p < .001). HCPs and patients named similar obstacles for implementing PPIE in research, though numerous creative solutions were found during the workshop (engagement). (3) The outcomes were integrated into a training tool (White‐Board movie). Conclusion Although HCPs and patients acknowledge the benefit of PPIE, the presented results highlight the lack of awareness about the concept, and the need for effective tools for researchers to integrate PPIE throughout the entire research process, thereby contributing to a sustainable change within the scientific culture.

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Section: Discussionmentioning

confidence: 64%

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confidence: 55%

Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

et al. 2023

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“… 15 Although the authors of these studies did not attempt to measure the proportion of published papers involving PPI, as we have done here, they uniformly identified few studies reporting PPI within the large literatures in which they were interested; a study of clinical trials published in nursing journals failed to find any evidence of PPI. 35 We know of only one recent study on the prevalence of PPI in general medical research, which, in a smaller sample, found that 11% of papers reported PPI inclusion. 36 We are unaware of any other studies on the prevalence of PPI inclusion or of factors associated with it.…”

Section: Discussionmentioning

confidence: 98%

How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors

et al. 2022

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ObjectivesPatient and public involvement (PPI) in health research is required by some funders and publications but we know little about how common it is. In this study we estimated the frequency of PPI inclusion in health research papers and analysed how it varied in relation to research topics, methods, funding sources and geographical regions.DesignCross-sectional.MethodsOur sample consisted of 3000 research papers published in 2020 in a general health-research journal (BMJ Open) that requires a statement on whether studies included PPI. We classified each paper as ‘included PPI’ or ‘did not include PPI’ and analysed the association of this classification with location (country or region of the world), methods used, research topic (journal section) and funding source. We used adjusted regression models to estimate incident rate ratios of PPI inclusion in relation to these differences.Results618 (20.6%) of the papers in our sample included PPI. The proportion of papers including PPI varied in relation to location (from 44.5% (95% CI 40.8% to 48.5%) in papers from the UK to 3.4% (95% CI 1.5% to 5.3%) in papers from China), method (from 38.6% (95% CI 27.1% to 50.1%) of mixed-methods papers to 5.3% (95% CI –1.9% to 12.5%) of simulation papers), topic (from 36.9% (95% CI 29.1% to 44.7%) of papers on mental health to 3.4% (95% CI –1.3% to 8.2%) of papers on medical education and training, and funding source (from 57.2% (95% CI 51.8% to 62.6%) in papers that received funding from the UK’s National Institute for Health Research to 3.4% (95% CI 0.7% to 6.0%) in papers that received funding from a Chinese state funder).ConclusionsMost research papers in our sample did not include PPI and PPI inclusion varied widely in relation to location, methods, topic and funding source.

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“…Parents of children with ABI have been involved in the design of this protocol to seek advice on the relevance of the topic and the study approach. 13 Amendments were made to include parental experiences of different conditions associated with ABI, such as TBI or brain tumours, as parents perceived the experience may be different across various types of ABI.…”

Section: Methods and Analysismentioning

confidence: 99%

Parents’ experience of children with acquired brain injury undergoing neuro-rehabilitation: thematic synthesis protocol

Fernandes¹,

Rathinam²,

Topping³

2023

BMJ Open

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IntroductionChildren with moderate to severe acquired brain injury frequently require a period of demanding medical and rehabilitative care to optimise their long-term capabilities and quality of life. Usually, the initial acute care is provided in tertiary centres and can last up to 12 months following the original injury. Parents of children with acquired brain injury share that experience with their child and face many different challenges encountered as their child’s long-term needs become apparent. Parents are essential partners in care, hence there is a need to better understand their experiences to support them as they face those challenges and adapt to the needs of their child. We aim to synthesise the qualitative evidence exploring parents’ experiences of children undergoing neuro-rehabilitative care.Methods and analysisThe Enhancing Transparency in Reporting the Synthesis of Qualitative Research guideline was used in the design of this protocol. The Population, Exposure and Outcome model was used to define inclusion and exclusion criteria and refine search terms. The databases Ovid Embase, Ovid MEDLINE, CINAHL, Scopus and PsychINFO will be searched from 2009 to 2022. Two independent reviewers will review studies, assess quality using the Critical Appraisal Skills Programme and scrutinise and extract the data. Disagreements will be resolved after discussion with the third reviewer. Thematic synthesis using Thomas and Harden’s approach will be undertaken to provide the evidence to develop a model for parental support during the first year of their child’s neuro-rehabilitation.Ethics and disseminationEthical committee approval will not be required as no new data will be collected. The findings will be disseminated through presentations at professional conferences, publications in peer-reviewed journals and shared with the public through relevant charities and local family support groups and networks.PROSPERO registration numberCRD42022333182.

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Reporting of patient and public involvement and engagement (PPIE) in clinical trials published in nursing science journals: a descriptive study

Cited by 13 publications

References 11 publications

Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors

Parents’ experience of children with acquired brain injury undergoing neuro-rehabilitation: thematic synthesis protocol

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