“About sixty per cent I want to do it”: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study

Boylan, Anne‐Marie; Locock, Louise; Thomson, Richard; Staniszewska, Sophie

doi:10.1111/hex.12883

Cited by 92 publications

(180 citation statements)

References 29 publications

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“…On a more positive note, having role models and hearing from colleagues experienced in PPI may be bene cial [21]. We hope that the re ections we present in this paper will prompt further attempts by researchers to try novel approaches to engaging patients and the public in their work.…”

Section: Discussionmentioning

confidence: 78%

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Broadening Diversity Through Creative Engagement in Research Prioritisation

Tierney¹,

Dawson²,

Boylan³

et al. 2020

Preprint

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Background: Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We wanted to try out using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods: We contacted existing groups and organisations to reach people who are not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with mental health conditions, and c) from Black, Asian and Minority Ethnic backgrounds. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss the final pieces of art that were created, and the processes involved in their generation.Results: From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) supporting discussion of women’s health issues in South Asian communities, c) information needs, anxiety/guilt around accessing care and costs associated with this for people with a mixture of physical and mental health conditions. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork has helped them to feel their voice has been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and then producing a study. Conclusions: We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future public involvement and engagement, building on what we have learnt from the project described in this paper.

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Section: Discussionmentioning

confidence: 78%

“…Furthermore, researchers may be disinclined to try a novel approach if they feel daunted by the prospect of embedding PPI into their work, especially when resources to undertake this activity in a meaningful manner are lacking [21].…”

Section: Discussionmentioning

confidence: 99%

Broadening Diversity Through Creative Engagement in Research Prioritisation

Tierney¹,

Dawson²,

Boylan³

et al. 2020

Preprint

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show abstract

“…Similarly, the requirement that certain academic leads attend additional service user meetings and deliver PPI reports to the Executive may have exacerbated unwelcome pressures for staff. When PPI is perceived as an imposition, academics may be less receptive to arguments in its favour [22,42].…”

Section: Discussionmentioning

confidence: 99%

Between funder requirements and ‘jobbing scientists’: the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study

Evans

Papoulias

2020

Res Involv Engagem

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Background: In the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerment, self-respect and value for service users. Organisational context can significantly influence the operationalisation of PPI. Research has highlighted power asymmetries between clinicians, researchers and service users. A resistance to power sharing, tokenism and assimilation into the existing culture suggest that a consultative, technocratic form of PPI is operating within health research settings. The aim of the study was to explore the development of PPI within a London based mental health biomedical research centre (BRC) over a period of 10 years from its inception. Methods: This qualitative study compared data from 52 organisational documents and 16 semi-structured interviews with staff and service users associated with PPI within the Maudsley BRC. The data were analysed using inductive thematic analysis. Study design, data collection, analysis and write up were conducted by service user researchers. Results: Our analysis showed a picture of increasing activity and acceptance of PPI, its alignment with the broader BRC research agenda, progressive involvement of service users in governance, and the development of a collaborative culture in research processes. The presence of salaried service user researchers in the organisation was key to this progress. However, PPI remained localised and under resourced and there was a reluctance to change working practices which resulted in perceptions of tokenism. Service users faced conflicting expectations and were expected to assimilate rather than challenge the organisation's 'biomedical agenda'.

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“…Interestingly, a study in the primary care setting found researchers perceived the most positive impact of PPI when the approach included more indicators of good practice such as offering training to contributors (13). However, despite the number of frameworks described, researchers often feel unequipped in knowing how best to involve patients and members of the public and what bene ts they might reasonably expect (18).…”

Section: Introductionmentioning

confidence: 99%

Involving Research Participants in a Pan-European Research Initiative: The EPAD Participant Panel Experience

Gregory

Bunnik

Callado

et al. 2020

Preprint

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Background: Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts. Methods: In this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs. Results: The impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings. Conclusions: The EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.

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“About sixty per cent I want to do it”: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study

Cited by 92 publications

References 29 publications

Broadening Diversity Through Creative Engagement in Research Prioritisation

Broadening Diversity Through Creative Engagement in Research Prioritisation

Between funder requirements and ‘jobbing scientists’: the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study

Involving Research Participants in a Pan-European Research Initiative: The EPAD Participant Panel Experience

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