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There has been considerable momentum within the NHS over the last 10 years to develop greater patient and public involvement (PPI). This commitment has been reflected in numerous policy initiatives. In patient safety, the drive to increase involvement has increasingly been seen as an important way of building a safety culture. Evidence suggests, however, that progress has been slow and even more variable than in health care generally. Given this context, the paper analyses some of the key underlying drivers for involvement in the wider context of health and social care and makes some suggestions on what lessons can be learned for developing the PPI agenda in patient safety. To develop PPI further, it is argued that a greater understanding is needed of the contested nature of involvement in patient safety and how this has similarities to the emergence of user involvement in other parts of the public services. This understanding has led to the development of a range of critical theories to guide involvement that also make more explicit the underlying factors that support and hinder involvement processes, often related to power inequities and control. Achieving greater PPI in patient safety is therefore seen to require a more critical framework for understanding processes of involvement that can also help guide and evaluate involvement practices. 相似文献
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ObjectiveTo understand how current funding expectations that applied health research is undertaken in partnership with research institutions, health service providers and other stakeholders may impact on patient and public involvement (PPI).BackgroundWhile there is considerable research on the potential impact of PPI in health research, the processes of embedding PPI in research teams remain understudied. We draw on anthropological research on meetings as sites of production and reproduction of institutional cultures and external contexts to investigate how these functions of meetings may affect the potential contributions of patients, carers and the public in research.MethodsWe present an ethnography of meetings that draws from a larger set of case studies of PPI in applied health research settings. The study draws on ethnographic observations, interviews with team members, analysis of documents and a presentation of preliminary findings through which feedback from informants was gathered.ResultsWe identified four means by which the oversight meetings regulated research and constrained the possibilities for PPI: a logic of ‘deliverables’ and imagined interlocutors, the performance of inclusion, positioning PPI in an ‘elsewhere’ of research, and the use of meetings to embed apprenticeship for junior researchers.ConclusionsPPI is essentially out of sync from the institutional logic of ‘deliverables’ constituting research partnerships. Embedding PPI in research requires challenging this logic. 相似文献
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INTRODUCTION: Patient and public involvement is the cornerstone of the 'patient-led' National Health Service (NHS). Though the UK has had state sponsored arrangements for patient and public involvement since 1974, they have become fragmented and unstable. Patients' forums and the Commission for Patient and Public Involvement in Health replaced community health councils (CHCs) and their national association in England in 2003, but now will be replaced by local involvement networks (LINks) and the Commission will be abolished in 2007. LEARNING FROM HISTORY: This study provides an overview of research on the effectiveness of arrangements for patient and public involvement and reviews the debates about accountability, independence, ensuring consistency of performance, representation and how arrangements for the NHS fit within the wider agenda of citizenship and renewal of democracy. It explores key themes and areas for learning to inform the debate about how LINks might work effectively to improve the health of local people, in particular addressing issues of equity, representation and citizen engagement. CONCLUSIONS: The proposed LINks provide the opportunity to integrate patient and public involvement into wider initiatives for local democracy and citizen engagement. But debates and key issues about user and public involvement in the 1970s remain current and unresolved. If the new LINks are to succeed where forums and CHCs are considered to have failed, the strengths and weakness of both need to be understood and addressed. 相似文献
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Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process 下载免费PDF全文
Anna Kearney BSc PGCert Paula Williamson BSc PhD Bridget Young BA PhD Heather Bagley BA MPhil Carrol Gamble Bsc PhD Simon Denegri BA Delia Muir BA Natalie A. Simon BSc Stephen Thomas MBA Jim T. Elliot Bsc PhD Helen Bulbeck BA PGCert MA MA PhD Joanna C. Crocker MBiochem PhD Claire Planner BA MSc Claire Vale PhD Mike Clarke DPhil Tim Sprosen BSc DPhil Kerry Woolfall BA MA PhD 《Health expectations》2017,20(6):1401-1410
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Extent,quality and impact of patient and public involvement in antimicrobial drug development research: A systematic review 下载免费PDF全文
David Evans DPhil Emma Bird MSc Andy Gibson PhD Sally Grier BSc Teh Li Chin FRCPath Margaret Stoddart PhD Alasdair MacGowan FRCP the North Bristol Microbiology Patient Panel 《Health expectations》2018,21(1):75-81
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Victoria Cluley Alexandra Ziemann Claire Feeley Ellinor K. Olander Shani Shamah Charitini Stavropoulou 《Health expectations》2022,25(3):840
BackgroundPatient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under‐reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation.MethodsThe scoping review was conducted in accordance with PRISMAScR and included any study published in a peer‐reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed‐method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers.ResultsOf the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion.ConclusionHealthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation.Patient or Public ContributionOne of the coauthors of the paper (S. S.) is a service user with extensive experience in PPI research. S. S. supported the analysis and writing up of the paper. 相似文献
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Jo Brett MSc MA BSc Sophie Staniszewska DPhD BSc Carole Mockford DPhil MA BSc Sandra Herron‐Marx PhD BA DPSN RGN John Hughes Colin Tysall Rashida Suleman 《Health expectations》2014,17(5):637-650
Background
There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.Objective
To identify the impact of patient and public involvement on health and social care research.Design
A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist.Inclusion criteria
All study types that reported the impact PPI had on the health and/or social care research study.Main results
A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.Conclusion
This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. 相似文献10.
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Disentangling patient and public involvement in healthcare decisions: why the difference matters 下载免费PDF全文
Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal‐type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences. 相似文献
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Michele S. Y. Biddle BPharm MScPH Andy Gibson BAHons MA PhD David Evans BA MA DPhil 《Health & social care in the community》2021,29(1):18-27
The Innovative Medicines Initiative (IMI) is making great strides in promoting patient and public involvement (PPI) in health research across Europe, supporting patient organisations to be involved in the projects that it funds. Despite this, the literature around PPI in health services and research originating from European countries appears less than from the United Kingdom (UK), where PPI is well established. Therefore, we conducted a systematic review to explore the attitudes and approaches to PPI across Europe. Eight scientific databases were systematically searched and data extracted. Data quality was assessed using a checklist based on the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) (Staniszewska et al., Research, Involvement and Engagement, 3 , 13, 2017) and the critical appraisal guidelines developed by Wright et al. (Health Expectations, 13 , 359, 2010). We included all studies reporting PPI activity in both public and private health services and research institutions in the World Health Organization European region, excluding the UK, published in the English language from 1996 to 2018. Forty studies in total were included in the analysis. The studies imply a growing interest and support for the idea of PPI in health services and, to a lesser extent, in health research. There seems to be a convergence of conceptualisations of PPI across Europe, with internationally significant areas of innovative work taking place in countries such as the Netherlands and the Scandinavian countries. However, the implementation of PPI is highly uneven, and PPI is not yet firmly embedded or adequately formalised in European healthcare systems and research, possibly due to a lack of infrastructure, guidance and support. In order to try to get a better understanding of what is happening on the ground, we are carrying out a survey with potential follow-up interviews as the next part of this research project. This work is currently on hold due to the COVID-19 pandemic. 相似文献
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Kristina Staley PhD Sarah A. Buckland BSc Helen Hayes MSc Maryrose Tarpey BSocSc. PGDipPSE 《Health expectations》2014,17(6):755-764
Introduction
It is now more widely recognized that public involvement in research increases the quality and relevance of the research. However, there are also more questions as to exactly how and when involvement brings added value.The nature of the current evidence of impact
Based on the findings of recent literature reviews, most reports of public involvement that discuss impact are based on observational evaluations. These usefully describe the context, the type of involvement and the impact. However, the links between these factors are rarely considered. The findings are therefore limited to identifying the range of impacts and general lessons for good practice. Reflecting on the links between context, mechanism and outcome in these observational evaluations identifies which aspects of the context and mechanism could be significant to the outcome. Studies that are more in line with the principles of realistic evaluation can test these links more rigorously. Building on the evidence from observational evaluations to design research that explores the ‘missing links’ will help to address the question ‘what works best, for whom and when’.Conclusions
We conclude that a more intentional and explicit exploration of the links between context, mechanism and outcome, applying the principles of realistic evaluation to public involvement in research, should lead to a more sophisticated understanding of the factors that increase or decrease the likelihood of positive outcomes. This will support the development of more strategic approaches to involvement maximizing the benefits for all involved. 相似文献17.
Natalie Armstrong BA MSc PhD Georgia Herbert BSc MSc PhD Emma‐Louise Aveling BSc MPhil PhD Mary Dixon‐Woods BA DipStat MSc DPhil Graham Martin MA MSc PhD 《Health expectations》2013,16(3):e36-e47
Introduction
Patient and public involvement in healthcare planning, service development and health‐related research has received significant attention. However, evidence about the role of patient involvement in quality improvement work is more limited. We aimed to characterize patient involvement in three improvement projects and to identify strengths and weaknesses of contrasting approaches.Methods
Three case study quality improvement projects were purposively sampled from a broader programme. We used an ethnographic approach involving 126 in‐depth interviews, 12 weeks of non‐participant observations and documentary analysis. Data analysis was based on the constant comparative method.Results
The three projects differed in the ways they involved patients in their quality improvement work, including their rationales for including patients. We characterized three very different models of patient involvement, which were each influenced by project context. Patients played distinctive roles across the three projects, acting in some cases as intermediaries between the wider patient community and clinicians, and sometimes undertaking persuasive work to convince clinicians of the need for change. We identified specific strategies that can be used to help ensure that patient involvement works most effectively and that the enthusiasm of patients to make a difference is not dissipated.Conclusion
Patient involvement in quality improvement work needs careful management to realize its full potential. 相似文献18.
Preparing researchers for patient and public involvement in scientific research: Development of a hands‐on learning approach through action research 下载免费PDF全文
Maarten de Wit PhD Anna Beurskens PT PhD Barbara Piškur PhD Esther Stoffers MA Albine Moser RN MPH PhD 《Health expectations》2018,21(4):752-763
Background
Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5‐year coaching programme.Objective
To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants.Methods
A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation.Findings
The programme comprised a kick‐off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor‐made feedback. The programme concluded with a combined meeting with all stakeholders.Conclusion
Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers. 相似文献19.
A multidimensional conceptual framework for analysing public involvement in health services research
Sandy R. Oliver BA PhD Rebecca W. Rees MA MSc † Lorna Clarke-Jones BA PGDip ‡ Ruairidh Milne BA MB BS MSc FFPH § Ann R. Oakley BA PhD D. Litt. ¶ John Gabbay MSc FFPH Ken Stein MB ChB MSc FFPH †† Phyll Buchanan‡‡ Gill Gyte BSc MPhil §§ 《Health expectations》2008,11(1):72-84
Objective To describe the development of a multidimensional conceptual framework capable of drawing out the implications for policy and practice of what is known about public involvement in research agenda setting. Background Public involvement in research is growing in western and developing countries. There is a need to learn from collective experience and a diverse literature of research, policy documents and reflective reports. Methods Systematic searches of research literature, policy and lay networks identified reports of public involvement in research agenda setting. Framework analysis, previously described for primary research, was used to develop the framework, which was then applied to reports of public involvement in order to analyse and compare these. Findings The conceptual framework takes into account the people involved; the people initiating the involvement; the degree of public involvement; the forum for exchange; and methods used for decision making. It also considers context (in terms of the research focus and the historical, geographical or institutional setting), and theoretical basis. Conclusions The framework facilitates learning across diverse experiences, whether reported in policy documents, reflections or formal research, to generate a policy‐ and practice‐relevant overview. A further advantage is that it identifies gaps in the literature which need to be filled in order to inform future research about public involvement. 相似文献