Patient And Public Involvement In Research Research Articles

Patient-led research and displacements of biomedical knowledge production, distribution, and consumption.

Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research "mimes" biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices.

‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research

Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, ‘equality’, particularly in the form of ‘equality of opportunity’ as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of ‘equality of opportunity’ in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies.

Patient and public involvement (PPI) in health care: A systematic mapping review of systematic reviews

Introduction: While patient and public involvement (PPI) is increasingly required by policymakers and funding agencies, the vast amount of literature on this topic makes it difficult for stakeholders who are at the beginning of their journey to find guidance on conceptual frameworks, successful methods, and good examples for PPI in contexts/settings similar to their own. Although there are various conceptual frameworks available, especially for PPI in research [1], little is known about which conceptual frameworks are successfully being implemented in health care practice. Recently, [2] highlighted different theoretical traditions and the need to further develop theory-driven approaches to guide the process of involvement in more strategic ways. 
 Objectives: The overarching goal of this mapping review is to identify systematic reviews on PPI in health care practice worldwide to: 
 
 further examine the different conceptualizations of PPI in health care used in the literature (i.e., definitions, models, frameworks);
 provide an overview of the methods used to promote and implement PPI in health care;
 provide an overview of contextual factors such as:
 
 - the settings in which PPI is implemented in health care; 
 - the demographic characteristics of the patients and the publics involved;
 - the desired, achieved and reported outcomes of PPI; and 
 - the outcomes used to measure the effectiveness of PPI. 
 Method and preliminary results: Methodologically, a mapping review design was chosen to give an overview of findings, identify research gaps in the field and to provide the audience with intuitive and accessible visualisations. This review is co-designed and carried out in partnership with a patient (JB), who is also an active volunteer, representative and chair of a patient organization. 
 In December 2021, the study was registered on the Open Science Forum (https://osf.io/9b5j3) and an initial search on PubMed, Cinahl and PsycInfo resulted in 3763 articles after deduplication. Titles and abstracts were screened independently by 2 reviewers (VC, JB) and 95 articles were selected for full-text review. 35 articles were included in the study for detailed data extraction (VC, IB, JB). The themes covered in the articles range from PPI in the education and skills training of health care staff, PPI in design, development and evaluation of health care services and products, quality improvement, patient safety, infectious disease control, crisis management, mental health and health promotion. While data extraction has been completed, data synthesis is still ongoing at the time of abstract submission. An updated search is planned for December 2022. With this mapping review of systematic reviews, we hope to provide an overview of the field and some guidance to those wanting to involve patients, caregivers and the public in their upcoming projects. 
 References
 [1] Greenhalgh T, et al. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expectations 2019;22(4):785-801. DOI: 10.1111/hex.12888. 
 [2] Ocloo J, et al. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Research Policy and Systems 2021;19(1):8. DOI: 10.1186/s12961-020-00644-3.

Patient and public involvement in health research from researchers' perspective.

Patient and public involvement (PPI) is increasingly considered an integral part of health research, and the focus has shifted from why we need PPI to how users can be involved in a meaningful way. The rationale for investigating experiences with PPI from the perspective of occupational therapy (OT)-trained researchers' originates in the interrelationship between the inclusive approach to knowledge production, and participation and inclusion as core tenets of OT. The aim of this study was to explore PPI in health research from the perspective of OT-trained researchers. Semi-structured individual interviews were conducted online with nine Norwegian researchers. The interviews were analysed using reflexive thematic analysis. Professional background and clinical experience from person-centred OT formed the foundation for how these researchers approached and facilitated PPI in their research. Valuing experiential knowledge and facilitating PPI to be meaningful for public collaborators were highlighted as essential for PPI to have an impact. The need to balance mutual expectations, requirements for research, and what might be possible to achieve within a research study were found to be vital. Collaborative clinical experience constituted a sound foundation for implementing PPI in research. The occupational perspective underlines the importance of acknowledging experiential knowledge as essential to facilitating meaningful PPI. Challenges related to requirements for research and culture for implementing PPI were addressed by clarifying roles and expectations. Three public collaborators were involved in developing the aims, the interview guide, and the data analysis. They all had previous experience being involved in research.

Patient and public involvement in research: Reflections and experiences of doctoral cancer nurse researchers in Europe

Background Early career researchers lack guidance about patient and public involvement (PPI). The overall aim of the study was to explore the knowledge and experiences of using PPI in research among doctoral students who are registered nurses. Methods This qualitative study included findings generated from reflective essays and focus groups involving ten registered cancer nurses who are undertaking doctoral research. The study has two stages of data collection. Participants initially wrote a reflective essay using a set of guiding questions to structure a response which was subsequently analysed. Two focus groups were then conducted to provide further insight into the themes identified in the reflective essays. Reflective thematic analysis was used to identify, name, and define the final themes. Results There were ten participants from seven countries and were at various stages of their doctoral study. Analysis of data from reflective essays (n = 10) and focus groups (n = 2) identified four themes namely, (a) evolving recognition and appreciation of PPI, (b) embracing PPI and impact on doctoral studies, (c) the influence of the research environment, and (d) the need to empower doctoral students to integrate PPI in their research journey. Conclusion Participants reported differing experiences of PPI awareness showing disparity in guidance about PPI for junior researchers across Europe. We recommend provision of early PPI training for doctoral students to support and encourage involvement of patients and the public in their research. Opportunities for sharing PPI experiences to help improve PPI culture in research environments that support doctoral students should be explored.

COVID-19 Public Health Measures and Patient and Public Involvement in Health and Social Care Research: An Umbrella Review

An umbrella review of previously published systematic reviews was conducted to determine the nature and extent of the patient and public involvement (PPI) in COVID-19 health and social care research and identify how PPI has been used to develop public health measures (PHM). In recent years, there has been a growing emphasis on PPI in research as it offers alternative perspectives and insight into the needs of healthcare users to improve the quality and relevance of research. In January 2022, nine databases were searched from 2020-2022, and records were filtered to identify peer-reviewed articles published in English. From a total of 1437 unique records, 54 full-text articles were initially evaluated, and six articles met the inclusion criteria. The included studies suggest that PHM should be attuned to communities within a sociocultural context. Based on the evidence included, it is evident that PPI in COVID-19-related research is varied. The existing evidence includes written feedback, conversations with stakeholders, and working groups/task forces. An inconsistent evidence base exists in the application and use of PPI in PHM. Successful mitigation efforts must be community specific while making PPI an integral component of shared decision-making.

The benefits of continuing patient and public involvement as part of a randomised controlled trial during the Covid-19 global pandemic

Patient and public involvement (PPI) in clinical research strengthens the quality and relevance of research, and has been crucial to ensure that researchers continue to investigate relevant and important topics during the global Covid-19 pandemic. The MICE (Mental Health Intervention for Children with Epilepsy) randomised controlled trial relies upon PPI to steer the direction and delivery of the trial, and the PPI Research Advisory Group (RAG) adapted to remote online meetings during the pandemic. This article first describes how the PPI RAG supported the research trial during the course of the pandemic, particularly with key trial stages of recruitment, retention and follow-up. It considers how the PPI tasks were adapted to ensure that they remained meaningful throughout this period, particularly for children and young people. Second, the article explores the acceptability of PPI in research using teleconferencing methods, via a co-produced survey of the PPI group members. Survey results indicated that, while participants valued face-to-face meetings, having remote PPI meetings was preferable to having nothing. There was some suggestion that teleconferencing platforms make it challenging for reserved members of the group, and for children, to contribute. Our findings emphasise the importance of continuing PPI even when circumstances are sub-optimal. We hope that our findings will contribute to the wider conversation about what makes PPI effective, particularly in a digital world.

CN39 Development of a reference model for patient and public involvement in oncology research in French-speaking Switzerland

Patient and public involvement (PPI) in research is increasingly encouraged as a means of improving its validity and relevance. Although gaining momentum, the implementation of PPI in research in Switzerland remains recent. Our aim was to establish a PPI model for cancer research adapted to the local context that will assist researchers to apply PPI approaches within their projects. Two semi-directed focus groups were conducted with 10 local key informants including patient representatives (2), oncology healthcare professionals (3), PPI experts (2), experts in patient-reported measures (2), and health managers (1). A deductive thematic approach was used to identify benefits, limitations and facilitators of establishing a PPI model in cancer research in the local context. In addition, we identified established frameworks in research and/or cancer research to analyze the main concepts and elements to be considered. Consensus was reached on the benefits of involving patients in research, allowing for more specific, relevant, and comprehensive studies. Participants also identified limiting factors such as the lack of PPI culture in healthcare research or the need for a paradigm shift at different levels. Among facilitators for the success and long-term sustainability of PPI were awareness of the resources, capacities of the research organization and capabilities of the patients, the need for PPI training for both researchers and patients, and the recognition of patient’s contributions. Nine different frameworks from seven countries were retained for further analysis. Main elements identified related to the goals to be achieved (why?), the knowledge that patients can contribute (what?), and the types and degree of patients' involvement (who & how?). The resulting SCCL-PPI model is multidimensional, comprising the stages of research, different levels and types of involvement, capabilities required from patients and capacities of the research group/organization. It is important for researchers to make a careful assessment of each of these dimensions. We chose to depict it using the Rubik’s cube to reflect the importance of adaptability of a PPI approach to each individual research project.

S06-1 Putting young people at the heart of physical activity research design: The Walking In ScHools (WISH) Study

Abstract Background Young people have the right to be informed and consulted about decisions affecting their lives. Youth Patient and Public Involvement (PPI) should be encouraged to ensure research is carried out ‘with' or ‘by' young people rather than ‘to', ‘about' or ‘for' them. PPI can ensure research is relevant, results are accessible and recruitment rates are improved. Young people have had limited involvement in the design, implementation and dissemination of public health research and there have been calls for a greater focus on youth PPI in research. Methods Following the WISH feasibility study that consulted young people pre and post-intervention, a Youth Advisory Group (YAG) was set up within the main trial. The WISH study is a clustered randomised controlled trial in which a peer-led, school-based, brisk walking intervention is compared to usual physical activity in adolescent females. The YAG was introduced to inform intervention delivery and provide researchers with an understanding of what would encourage/discourage participation. Schools were asked to invite pupils aged 12-14 years (participants) and 15-18 years (walk leaders). Participative methods were used to develop and review study documentation. The YAG completed a short questionnaire and recruitment rates were monitored. Results Fourteen pupils from 3 schools attended the 2019 YAG meeting. The YAG agreed the meeting was a good way of getting young people involved in research (93%) and attendees enjoyed the meeting (100%). As a result, changes were made to study documentation, incentives were purchased and recruitment materials developed. Participant recruitment was higher in schools who participated in the YAG (54%) compared to those who did not (47%). In 2021 the second YAG occurred and 1 teacher, 12 participants and 10 walk leaders from 2 schools provided feedback on the trials COVID-19 contingency plan. The girls felt their feedback was valued (100%) and it was important young people had the chance to contribute to research studies (100%). Conclusions The views of young people have been central to the development of the WISH Study and although youth PPI is not without challenges, there are many benefits for researchers, the study and the young people involved.

Participatory research in health promotion: a critical review and illustration of rationales.

In health promotion research, enthusiasm for patient and public involvement (PPI) is growing. However, a lack of conceptual clarity leads to ambiguities in participatory processes and purposes, and hampers efforts to achieve and evaluate PPI in research. This study provides an overview of its underlying reasons—or rationales—so as to better understand, guide and interpret PPI in research practice. We conducted a critical review to identify typologies of rationales for PPI. We re-categorized the different types of rationales from these typologies based on their content. We illustrated the resulting categories of rationales with examples from a case study on PPI in research on Lyme disease. Five categories of rationales for PPI were identified. The democratic rationale reflects the normative right of citizens to have a voice in research. The consumerist rationale refers to the economic right of stakeholders with interests to have a say. Rooted in social justice, the transformative rationale seeks to empower marginalized groups. The substantive rationale starts from epistemic considerations and aims to improve the quality of knowledge that research generates. The instrumental rationale is of pragmatic origin and refers to improved efficiency and effectiveness of the research. Our overview of categories of rationales can be used as a frame of reference for PPI in health promotion research. Exploring, stating explicitly and reflecting on the underlying reasons for PPI may help to define realistic purposes, select matching approaches and design appropriate evaluation studies. This might also contribute to the conceptualization of PPI.

What Matters to Whom: Patient and Public Involvement in Research.

We outline a call to action for reproductive health researchers to include patient and public involvement (PPI) in research. PPI prioritizes the patient perspective from study design through dissemination of results which centers the people research intends to serve. PPI highlights the patient as an expert in their own condition. PPI that includes groups harmed by health care disparities can draw attention to these harms and generate novel approaches to address them. Numerous frameworks exist for the use of PPI in research. Because obstetrics and gynecology conditions can be particularly sensitive, PPI is crucial in our field.

Patient involvement in oncology research - Development of a reference framework in French-speaking Switzerland

Patient and public involvement (PPI) in research is increasingly recognized and encouraged by public and funding bodies. Although gaining momentum, the implementation of PPI in Switzerland remains recent. Since 2021, the Laboratoire des Patients, affiliated to the Swiss Cancer Center Léman (SCCL), aims to establish a PPI model for oncology research adapted to the local context that will assist researchers to apply PPI approaches within their projects. Among its functions, the Laboratoire des Patients will offer a training program for patients and researchers targeting PPI in research, support throughout the projects, and consultation and mediation services for patients and researchers. This article discusses the utility of PPI in research and describes the SCCL-PPI model.

Patient and public involvement in oesophageal cancer survivorship research

Background Good clinical research is often conducted in close collaboration between patients, the public, and researchers. Few studies have reported the development of patient and public involvement (PPI) in research outside the United States and the United Kingdom, and for patients with more aggressive cancers. The study aimed to describe and evaluate the development of PPI in oesophageal cancer survivorship research in Sweden by the use of a framework to support the process. Methods Oesophageal cancer survivors were recruited to a PPI research collaboration at Karolinska Institutet, Sweden. The development process was supported by the use of a framework for PPI, ‘Patient and service user engagement in research’. Insights, benefits, and challenges of the process were described and discussed among the collaborators. Results The collaboration resulted in joint publications with a more patient- and family-focussed perspective. It also contributed to the development of information folders about survivorship after oesophageal cancer surgery and national conference arrangements for patients, their families, healthcare workers, and researchers. Since the PPI contributors were represented in patient organisations and care programmes, the dissemination of research results increased. Their contributions were highly valued by the researchers, but also revealed some challenges. The use of a structured framework contributed to support and facilitated the process of establishing PPI in research collaboration. Conclusions A genuine interest in establishing PPI in research and an understanding and respect for the patients’ expertise in providing a unique inside perspective was imperative for a successful collaboration. Research focus should not only be on mortality and reductions in daily life, but also on positive outcomes. Using a framework supports development and avoids pitfalls of PPI collaboration. Patient and public contribution Patient partners were equal collaborators in all aspects of the study.

Adapting patient and public involvement in patient-oriented methods research: Reflections in a Canadian setting during COVID-19.

BackgroundProcesses of the patient and public involvement (PPI) in health research shifted quickly during 2020. Faced with large‐scale issues, such as the COVID‐19 pandemic, the need to adapt processes of PPI to uphold commitments to nurturing the practice of ‘nothing about us without us’ in research has been urgent and profound. We describe how processes of PPI in research on patient‐oriented methods of knowledge translation and implementation science were adapted by four teams in a Canadian setting.MethodsAs part of an ongoing quality improvement self‐study to enhance PPI within these teams, team members shared their experiences of PPI in the context of this pivotal year during interviews and facilitated discussions. Drawing on these experiences, we outline challenges and reflections for adapting processes of PPI in health research on methods in times of urgency, conflict and fast‐moving change.DiscussionOur reflections offer insight into common issues encountered across teams that may be amplified during times of rapid change, including handling change and uncertainty, sustaining relationship‐building and hearing differing perspectives in processes of PPI.ConclusionThese learnings present an opportunity to help others active in or planning patient‐oriented methods research to reflect on the changing nature of PPI and how to adapt PPI processes in response to turbulent situations in the future.

'A limpet on a ship': Spatio-temporal dynamics of patient and public involvement in research.

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.

Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews

BackgroundThe emergence of patient and public involvement (PPI) in healthcare in the UK can be traced as far back as the 1970s. More recently, campaigns by harmed patients have led to a renewed focus on strengthening PPI. There is a growing awareness of the benefits of PPI in research as well as a need to address power inequities and a lack of diversity and inclusion. This review was undertaken to look at evidence for theories, barriers and enablers in PPI across health, social care and patient safety that could be used to strengthen PPI and address a perceived knowledge and theory gap with PPI in patient safety.MethodsWe searched MEDLINE, EMBASE and PsycINFO from inception to August 2018, using both MeSH and free-text terms to identify published empirical literature. Protocols in PROSPERO were also searched to identify any systematic reviews in progress. The extracted information was analysed using a narrative approach, which synthesises data using a descriptive method.ResultsForty-two reviews were identified and grouped by key outcomes. Twenty-two papers mentioned theory in some form, 31 mentioned equality and diversity (although with no theory mentioned in this area), and only 19 cited equality and diversity as a barrier or enabler. Thirty-four reviews identified barriers and enablers at different organisational levels: personal/individual; attitudes; health professional; roles and expectations; knowledge, information and communication; financing and resourcing; training; general support; recruitment and representation, PPI methods and working with communities and addressing power dynamics.ConclusionsThe review findings suggest that a commitment to PPI and partnership working is dependent on taking a whole system approach. This needs to consider the complex individual and organisational enablers and constraints to this process and address imbalances of power experienced by different groups. Addressing equality and diversity and use of a theory-driven approach to guide PPI are neglected areas. The long tradition of involvement across health and social care can provide considerable expertise in thinking about ways to strengthen approaches to PPI. This is especially important in patient safety, with a much newer tradition of developing PPI than other areas of healthcare.

Is Co-production Just a Pipe Dream for Applied Health Research Commissioning? An Exploratory Literature Review.

Background and Rationale: Internationally, the idea of “co-production' has become more popular in health research because of the promise of partnership between researchers and patients to create research that focuses on patients' needs. Patient and public involvement (PPI) at an early stage in deciding what research should be funded, can improve the quality and impact of research. However, professional power over the process places limits on the public practising their participatory rights for involvement in commissioning research that affects them and can leave members of the public feeling unheard or excluded, particularly within the context of early phase applied health research.Aim: This article explores whether and how the public can be involved in the co-production of research commissioning early on in the process, with a focus on the power relations that pervade basic and early phase translational applied health research.Methods: An exploratory literature review of international peer-reviewed and gray health research literature using structured searches of electronic databases and key search terms.Results: There is very little literature that critically evaluates how PPI is embedded into the early phases of the commissioning process. The field of basic or early translational applied research appear to be particularly challenging. Four themes which emerged from the review are: reasons for PPI in research commissioning; benefits of PPI at strategic levels of research commissioning; contributions of patients and members of the public; improving PPI in research commissioning.Conclusion: Although the public are being consulted at some stages of the research commissioning process, it is evident that the process of determining research priorities and agendas is far from being widely co-produced. Moving PPI from a consultative paternalistic model to a collaborative partnership model should be a priority for commissioners. Significant changes to communication, practices, systems, structures, or cultures that exclude patients and the public from contributing in meaningful ways, are needed to fulfill the potential of co-produced models of research commissioning.

Whose perspective is it anyway? Dilemmas of patient involvement in the development of a randomized clinical trial – a qualitative study

Background: Patient and public involvement (PPI) is increasingly becoming a requirement in the effort to improve the relevance and quality of healthcare research. We examined how involving patients with lower education levels affected PPI in the development of the MyHealth randomized clinical trial of breast cancer follow-up from the perspectives of the patients and professionals.Material and methods: Eight women who had completed breast cancer treatment, four with fewer than 10 years of education, were recruited as members of a patient panel advising researchers in the development of the trial. We carried out individual and focus group interviews with panel members and recruiting nurses between April and September 2016. Researcher observations and changes made based on panel feedback were also documented. Patients were asked to evaluate the process according to a PPI theoretical framework with four dimensions: (i) ways of involvement, (ii) research vs. patient concerns, (iii) strength of the patient’s voice, and (iv) degree of change. A combination of inductive and deductive thematic analysis was conducted whereby emerging themes were organized using the above framework.Results: All patient contributors reported high satisfaction with being involved and PPI improved trial materials and recruitment strategy. However, contradictory perspectives between lay and expert approaches to research led to dilemmas not related to educational background. Patients were often more concerned with unmet needs after cancer than with research, and the scientific hierarchy made it difficult for researchers to include the patient perspective if it challenged research requirements. Nurses also faced ethical dilemmas when recruiting patients as PPI contributors.Conclusions: Our findings challenged the assumption that PPI automatically leads to a broad range of patient perspectives that can directly improve research relevance and quality. This highlights the need for more research and better guidance on the use of PPI in research.

Synthesising conceptual frameworks for patient and public involvement in research \u2013 a critical appraisal of a meta-narrative review

BackgroundA number of conceptual frameworks for patient and public involvement (PPI) in research have been published in recent years. Although some are based on empirical research and/or existing theory, in many cases the basis of the conceptual frameworks is not evident. In 2015 a systematic review was published by a collaborative review group reporting a meta-narrative approach to synthesise a conceptual framework for PPI in research (hereafter ‘the synthesis’). As the first such synthesis it is important to critically scrutinise this meta-narrative review. The ‘RAMESES publication standards for meta-narrative reviews’ provide a framework for critically appraising published meta-narrative reviews such as this synthesis, although we recognise that these were published concurrently. Thus the primary objective of this research was to appraise this synthesis of conceptual frameworks for PPI in research in order to inform future conceptualisation.MethodsFour researchers critically appraised the synthesis using the RAMESES publication standards as a framework for assessment. Data were extracted independently using a data extraction form closely based on the RAMESES publication standards. Each item from the standards was assessed on a four point scale (0 = unmet, 1 = minimally met, 2 = partly met, 3 = fully met). The four critical appraisals were then compared and any differences resolved through discussion.ResultsA good degree of inter-rater reliability was found. A consensus assessment of the synthesis as a meta-narrative review of PPI conceptual frameworks was achieved with an average of ‘1’ (minimally met) across all 20 items. Two key items (‘evidence of adherence to guiding principles of meta-narrative review’ and ‘analysis and synthesis processes’) were both wholly unmet. Therefore the paper did not meet our minimum requirements for a meta-narrative review. We found the RAMESES publication standards were a useful tool for carrying out a critical appraisal although some minor improvements are suggested.ConclusionsAlthough the aims of the authors’ synthesis were commendable, and the conceptual framework presented was coherent and attractive, the paper did not demonstrate a transparent and replicable meta-narrative review approach. There is a continuing need for a more rigorous synthesis of conceptual frameworks for PPI.

The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study

Plain English summaryIn the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings.Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI.In partnership with PPI contributors, we have used these findings to develop:a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPIFifteen co-produced recommendations to improve the practice and delivery of PPI.Background: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research.Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded by the NIHR School for Primary Care Research (SPCR). We applied recognised quality indicators to assess the quality of PPI and assessed its impact on research.Results: We examined 200 grant applications and reports of 181 projects. PPI was evident in the development of 47 (24%) grant applications. 113 (57%) grant applications included plans for PPI during the study, mostly in study design, oversight, and dissemination. PPI during projects was reported for 83 (46%) projects, including designing study materials and managing the research. We identified inconsistencies between planned and reported PPI. PPI varied by study design, health condition and study population.Of 46 (24%) of 191 questionnaires completed, 15 reported PPI activity. Several projects showed best practice according to guidelines, in terms of having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However few projects offered PPI contributors training, used PPI to develop information for participants about study progress, and had PPI in advising on dissemination.Beneficial impacts of PPI in designing studies and writing participant information was frequently reported. Less impact was reported on developing funding applications, managing or carrying out the research. The main cost of PPI for researchers was their time. Many researchers found it difficult to provide information about PPI activities.Our findings informed:a new Cost and Consequences Framework for PPI in primary care research highlighting financial and non-financial costs, plus the benefits and harms of PPIFifteen co-produced recommendations to improve PPI in research and within the SPCR.Conclusions: The extent, quality and impact of PPI in primary care research is inconsistent across research design and topics. Pockets of good practice were identified making a positive impact on research. The new Cost and Consequences Framework may help others assess the impact of PPI.