Patient and researcher perspectives on facilitating patient and public involvement in rheumatology research

Pollock, Judith; Raza, Karim; Pratt, Arthur G.; Hanson, Helen; Siebert, Stefan; Filer, Andrew; Isaacs, John D.; Buckley, Christopher D.; McInnes, Iain B.; Falahee, Marie

doi:10.1002/msc.1171

Cited by 13 publications

(28 citation statements)

References 10 publications

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“…Training may be required (for both researchers and PRPs) and resources allocated to support the development of effective PPI, especially where local or institutional infrastructure or funding to support such activities is insufficient or absent. It was suggested in the current evaluation and elsewhere [28] that PPI related training could be integrated into basic training for research students. It is not difficult to imagine that funding bodies will increasingly expect institutional infrastructure, as well as project-specific capacity to support such PPI facilitators to be demonstrated, to ensure research relevance and impact.…”

Section: Discussionmentioning

confidence: 96%

“…Self-selected patient representatives often develop considerable research expertise in their own right, and this empowers them to contribute meaningfully to the research process. However, this could also be considered to detract from their position as representatives of the experience of lay people [28]. Ensuring that patients from all social groups have equal access to PPI is challenging, and the ability of patients at different stages of a disease to participate is likely to be variable, though they may have very different perspectives on research priorities.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“…Whilst PPI has become increasingly commonplace in clinical and health services research, it has been less frequently integrated with early phase translational and laboratory based research [26,27]. Although patients and researchers agree on the benefits of PPI in pre-clinical translational research in the context of rheumatology, associated challenges include communication between researchers and patients about scientific concepts and terminology and limited access to and awareness of PPI opportunities [28][29][30].…”

Section: Introductionmentioning

confidence: 99%

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Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

et al. 2020

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Plain English summaryPatient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients' needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM -Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English. AbstractBackground Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded 'EuroTEAM' (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of 'at risk' individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of (Continued on next page)

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Section: Discussionmentioning

confidence: 96%

Section: Strengths and Limitationsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

et al. 2020

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“…Research into PPI has mainly focused on the mechanisms of PPI, the varying perspectives on PPI and the motivations of the patients and public involved . A large body of research focuses on PPI in health research, particularly in more recent years. However, the specific role of patient and public involvement facilitators (PPIFs) remains under‐researched.…”

Section: Introductionmentioning

confidence: 99%

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

Todd

Coupland

Randall

2020

Health Expectations

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Objective Research into patient and public involvement (PPI) has not examined in detail patient and public involvement facilitators’ (PPIFs) roles and activities. This study analysed PPIFs’ roles using qualitative data gathered from three different UK health‐care organizations. Design Thematic analysis was used to examine cross‐sectional data collected using a mixed‐methods approach from three organizations: a mental health trust, a community health social enterprise and an acute hospital trust. The data set comprised of 27 interviews and 48 observations. Findings Patient and public involvement facilitators roles included the leadership and management of PPI interventions, developing health‐care practices and influencing quality improvements (QI). They usually occupied middle‐management grades but their PPIF role involved working in isolation or in small teams. They reported facilitating the development and maintenance of relationships between patients and the public, and health‐care professionals and service managers. These roles sometimes required them to use conflict resolution skills and involved considerable emotional labour. Integrating information from PPI into service improvement processes was reported to be a challenge for these individuals. Conclusions Patient and public involvement facilitators capture and hold information that can be used in service improvement. However, they work with limited resources and support. Health‐care organizations need to offer more practical support to PPIFs in their efforts to improve care quality, particularly by making their role integral to developing QI strategies.

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“…Thus, incorporating PPI should be beneficial to both researcher and research outputs. There tends to be a recognition within the biomedical community that PPI can be beneficial to all stakeholders (10). Awareness of PPI is certainly increasing, however, the incorporation of valuable and meaningful PPI as standard research practice is progressing slower than expected(11, 12).…”

Section: Introductionmentioning

confidence: 99%

Facilitating Patient and Public Involvement in basic and preclinical health research

Maccarthy

Guérin

Wilson

et al. 2018

Preprint

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9Involving patients in research broadens a researcher's field of influence and may generate novel ideas. 10 Preclinical research is integral to the progression of innovative healthcare. These are not patient-facing 11 disciplines and implementing meaningful PPI can be a challenge. A discussion forum and thematic 12 analysis identified key challenges of implementing PPI for preclinical researchers. In response we 13 developed a "PPI Ready" planning canvas. For contemporaneous evaluation of PPI, a psychometric 14 questionnaire and an open source tool for its evaluation were developed. The questionnaire measures 15 information, procedural and quality assessment. Combined with the open source evaluation tool, 16 researchers are notified if PPI is unsatisfactory in any of these areas. The tool is easy to use and adapts a 17 psychometric test into a format familiar to preclinical scientists. Designed to be used iteratively across a 18 research project, it provides a simple reporting grade to document satisfaction trend over the research 19 lifecycle. 20 Segurado (UCD School of Public Health, Physiotherapy and Sports Science) for their assistance and 396 advice. 397 Funding Acknowledgement 398

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Patient and researcher perspectives on facilitating patient and public involvement in rheumatology research

Cited by 13 publications

References 10 publications

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

Facilitating Patient and Public Involvement in basic and preclinical health research

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