Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

Knaapen, Loes; Lehoux, Pascale

doi:10.1080/09505431.2015.1125875

Cited by 20 publications

(20 citation statements)

References 66 publications

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“…A further strength of this research is its contribution to the growing body of evidence calling for a radical re-thinking of how PPI can be integrated into research in ways that are meaningful and which also maximize its potential impact. [76][77][78] It also supports the argument for clarification on the relationship between PPI, research and research ethics.…”

Section: Strengths and Limitations Of This Studysupporting

confidence: 57%

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: Strengths and Limitations Of This Studysupporting

confidence: 57%

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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“…Within our own study, we have seen how direct social and verbal exchanges facilitated deeper levels of understanding and the mutual negotiation of meaning. We need to come together to negotiate a balance between: “ill‐informed social experiments where any [involvement] practice is legitimate… [and] …the determinism of top‐down control by experts” . However, it is suggested that currently, no easy consensus will be reached:…”

Section: Discussionmentioning

confidence: 99%

The burden of proof: The process of involving young people in research

Dovey-Pearce

Walker

Fairgrieve

et al. 2019

Health Expectations

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Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical “proof” to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants’ perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of “the art of the possible,” and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow “prove” themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.

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“…The implication is that public involvement should be confined to funding decisions, prioritization of research agendas, research governance, and ethical review, where "layness" is the required asset. Knaapen and Lehoux (2016) similarly find confusion and contradiction in the underlying principles guiding PPI in clinical standard setting. They categorize arguments in favor of PPI into three main types.…”

Section: Typologies Of Ppimentioning

confidence: 99%

Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context

2017

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Patient and public involvement (PPI) in UK National Health Service (NHS) research has become an imperative in policy and practice. However, lack of clarity on what PPI is (or might be) has given rise to a poorly monitored, complex field of activity, variously framed by the expectations of policy makers, funders, host organizations, researchers, health professionals, individual recruits, volunteers, activists, and third sector organizations. The normative shift toward PPI has taken place within a neoliberal policy context, the implications of which needs to be explicitly considered, particularly after the Brexit referendum which has left policy makers and researchers wondering how to better appeal to a distrustful public subjected to "post-truth" and "dog whistle" politics. This commentary examines the prospects for a more critical approach to PPI which addresses context, is evidence-informed and mindful of persistent inequalities in health outcomes, at a time when models of PPI in NHS health research tend to be conceptually vague, derived from limited clinical and managerial settings, and centered on a construction of the abstract, rational, compliant, and self-managing patient or layperson.

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Three Conceptual Models of Patient and Public Involvement in Standard-setting: From Abstract Principles to Complex Practice

Cited by 20 publications

References 66 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

The burden of proof: The process of involving young people in research

Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context

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