Rethinking the relationship between science and society: Has there been a shift in attitudes to Patient and Public Involvement and Public Engagement in Science in the United Kingdom?

Boaz, Annette; Biri, Despina; McKevitt, Christopher

doi:10.1111/hex.12295

Cited by 79 publications

(126 citation statements)

References 13 publications

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“…In 2015, the NIHR in the UK concluded that despite PPI being progressively adopted, there were “inconsistencies in practice and implementation” and cited negative attitudes of researchers as a major barrier. Consequently, PPI is still often relegated to the role of “thinker at the edges,” within a dominant positivist research paradigm that hinders the inclusion of “lived experiences” of health and illness.…”

Section: Discussionmentioning

confidence: 99%

Researchers' perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

Puerta

Bartlam

Smith

2019

Health Expectations

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Background Singapore is becoming a world‐class research hub, promoting the advancement of patient care through translational clinical research. Despite growing evidence internationally of the positive impact of public involvement (PPI), in Singapore PPI remains unusual beyond patient participation as subjects in studies. Objective To explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore. Design Semi‐structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis. Results Whilst most participants (n = 20) expressed a lack of experience of PPI, the interview process provided an opportunity for reflection through which it emerged as a beneficial strategy. Interviewees highlighted both utilitarian and ethical reasons for implementing PPI, particularly around increasing the relevance and efficiency of research. In addition to those challenges to PPI documented in the existing literature, participants highlighted others specific to the Singaporean context that make PPI at an individual level unlikely to be successful, including the socio‐political environment and prevailing social and professional hierarchies. They also identified asset‐based strategies to overcome these, in particular, a more community‐oriented approach. Conclusion The cultural reluctance of individuals to question perceived authority figures such as researchers may be overcome by adopting an approach to PPI that is closer to family and local community values, and which facilitates patients and the public collectively engaging in research. Further work is needed to explore the views of patients and the public in Singapore, and the implications for other Asian communities.

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Section: Discussionmentioning

confidence: 99%

Researchers' perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

Puerta

Bartlam

Smith

2019

Health Expectations

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“…14 There have been few studies of how researchers have responded to the pressure to move towards a more participatory model of knowledge production. 15 The privileging of scientific expertise over lay experience has been remarkably resilient, and it has been noted that researchers are reluctant to cede control over research. 16,17 Despite some interest in, and support for, PPI in theory, researchers may feel apprehensive and reluctant to change their practice, given other professional and institutional priorities.…”

Section: Backg Rou N Dmentioning

confidence: 99%

“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

Locock

Thomson

et al. 2019

Health Expectations

165

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Background Funders, policy‐makers and research organizations increasingly expect health researchers in the UK to involve patients and members of the public in research. It has been stated that it makes research “more effective, more credible and often more cost efficient.” However, the evidence base for this assertion is evolving and can be limited. There has been little research into how health researchers feel about involving people, how they go about it, how they manage formal policy rhetoric, and what happens in practice. Objective To explore researchers’ experiences and perceptions of patient and public involvement (PPI). Methods Semi‐structured interview study of 36 health researchers (both clinical and non‐clinical), with data collection and thematic analysis informed by the theoretical domains framework. Results In the course of our analysis, we developed four themes that encapsulate the participants’ experiences and perceptions of PPI. Participants expressed ambivalence, cynicism and enthusiasm about PPI, an activity that creates emotional labour, which is both rewarding and burdensome and requires practical and social support. It is operationalized in an academic context influenced by power and incentives. Discussion and conclusions Researchers’ experiences and attitudes towards patient and public involvement are a key factor in the successful embedding of involvement within the wider research culture. We call for a culture change that supports the development of effective organizational approach to support involvement.

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“…At the same time, there is limited evidence demonstrating that PPI has changed clinical research practices (Boaz et al . , Rise et al . ).…”

Section: Assetisation As Valuation Practicementioning

confidence: 99%

Research campaigns in the UK National Health Service: patient recruitment and questions of valuation

Wienroth

Pearce

McKevitt

2019

Sociology Health & Illness

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The National Institute for Health Research (NIHR) aims to improve national ‘health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of ‘clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of ‘assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system.

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Rethinking the relationship between science and society: Has there been a shift in attitudes to Patient and Public Involvement and Public Engagement in Science in the United Kingdom?

Cited by 79 publications

References 13 publications

Researchers' perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

Researchers' perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

“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

Research campaigns in the UK National Health Service: patient recruitment and questions of valuation

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