Patient and public involvement in research in the English NHS: a documentary analysis of the complex interplay of evidence and policy

Evans, D.

doi:10.1332/174426413x662770

Cited by 17 publications

(20 citation statements)

References 18 publications

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“…Alongside this academic debate, a set of policy initiatives have encouraged greater PPI in health research . There has also been a significant investment in PES (particularly supported by science funders such as the UK Wellcome Trust) and activity by scientists to respond to public concerns about scientific issues.…”

Section: Introductionmentioning

confidence: 99%

“…Alongside this academic debate, a set of policy initiatives have encouraged greater PPI in health research. 9 There has also been a significant investment in PES (particularly supported by science funders such as the UK Wellcome Trust) and activity by scientists to respond to public concerns about scientific issues. While PES is a more established concept for biomedical researchers, PPI has a growing currency particularly given its profile with funding bodies such as the UK National Institute for Health Research (NIHR).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Biri

McKevitt

2014

Health Expectations

120

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BackgroundThe policy imperative to engage the public and patients in research can be seen as part of a wider shift in the research environment. This study addresses the question: Has there been a shift in attitudes to Patient and Public Involvement (PPI) and Public Engagement in Science (PES) amongst researchers?MethodsAttitudes to PPI and PES within a cluster of three NIHR supported Biomedical Research Centres were explored through in‐depth interviews with 19 researchers.ResultsParticipants distinguished PPI (as an activity involving patients and carers in research projects and programmes) from PES (as an activity that aims to communicate research findings to the public, engage the public with broader issues of science policy or promote a greater understanding of the role of science in society). While participants demonstrated a range of attitudes to these practices, they shared a resistance to sharing power and control of the research process with the public and patients.ConclusionWhile researchers were prepared to engage with the public and patients and listed the advantages of engagement, the study revealed few differences in their underlying attitudes towards the role of society in science (and science in society) to those reported in previous studies. To the participants science remains the preserve of scientists, with patients and the public invited to ‘tinker at the edges’.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Biri

McKevitt

2014

Health Expectations

120

View full text Add to dashboard Cite

show abstract

“…Indeed, as a result of the programme of PPI, patient involvement has become an increasingly standard requirement for clinical and academic researchers (Evans 2014). At the same time, there is limited evidence demonstrating that PPI has changed clinical research practices (Boaz et al 2016, Rise et al 2013.…”

Section: Ethical Valuationmentioning

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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“…In a number of countries, the last 20 years have seen an explosion in public participation in health systems governance, health research governance and health promotion. In a recent paper, Evans tracked the evolution of public and patient involvement in research in the UK through an analysis of policy documents (2). Similar to Mockford et al (3), he found public and patient involvement to be deeply imbedded in research funding structures, but concluded that the drive to involve raced ahead of the establishment of an evidence base for participation.…”

mentioning

confidence: 93%

Public participation: more than a method? Comment on “Harnessing the potential to quantify public preferences for healthcare priorities through citizens’ juries”

Boaz

Chambers

Stuttaford

2014

Int J Health Policy Manag

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While it is important to support the development of methods for public participation, we argue that this should not be at the expense of a broader consideration of the role of public participation. We suggest that a rights based approach provides a framework for developing more meaningful approaches that move beyond public participation as synonymous with consultation to value the contribution of lay knowledge to the governance of health systems and health research.

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Patient and public involvement in research in the English NHS: a documentary analysis of the complex interplay of evidence and policy

Cited by 17 publications

References 18 publications

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?

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?

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

Public participation: more than a method? Comment on “Harnessing the potential to quantify public preferences for healthcare priorities through citizens’ juries”

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