Public Involvement In Health Research Research Articles

Exploring the hidden demands for patients’ resources: How health researchers risk excluding patients from patient and public involvement in health research during recruitment

Patient involvement in health research is widely recognized to promote effective collaboration between health researchers and patients in endeavors to develop healthcare systems. Policy documents and research strategies stress the benefits of collaborative health research with patients. However, patient recruitment depends not only on health researchers' decisions but also on other key factors: patients' competencies and the structural framework of the healthcare and academic sectors. This article is a modest attempt to explain challenges connected to recruitment, as health researchers seek to involve citizens in health research. Through interviews with nurses and doctors who conduct research, I describe how and why different patients are recruited into research in the Danish healthcare system. I apply Bourdieu's concepts of field, cultural capital, and habitus to analyze how health researchers assess patients' social competencies as part of the recruitment process. I conclude that health researchers' positions shape the competencies and knowledge that are considered legitimate and can operate as capital in this complex and dynamic arena. Therefore, forms of competencies that can function as capital are unequally distributed and recruitment risks excluding marginalized and disadvantaged groups from becoming involved. The study contributes to the literature on participatory practices and highlights the hidden social demands that are produced between the healthcare sector and academic sector by understanding the experiences of health researchers and how they value communicative skills and knowledge about the healthcare sector. The paper ends with suggestions for future directions.

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 health research in Norway: a survey among researchers and patient organisations

BackgroundPatient and public involvement (PPI) in health research may improve both the relevance and quality of the research. There is however a lack of research investigating the experiences, attitudes and barriers towards PPI in clinical research in Norway. The Norwegian Clinical Research Infrastructure Network therefore conducted a survey among researchers and PPI contributors aiming to investigate experiences with PPI and identify current challenges for successful involvement.MethodsTwo survey questionnaires were developed and distributed in October and November 2021. The survey targeting 1185 researchers was distributed from the research administrative system in the Regional Health Trusts. The survey targeting PPI contributors was distributed through Norwegian patient organisations, regional and national competence centers.ResultsThe response rate was 30% among researchers and was unobtainable from PPI contributors due to the survey distribution strategy. PPI was most frequently used in the planning and conduct of the studies, and less utilized in dissemination and implementation of results. Both researchers and user representatives were generally positive to PPI, and agreed that PPI might be more useful in clinical research than in underpinning research. Researchers and PPI contributors who reported that roles and expectations were clarified in advance, were more likely to experience a common understanding of roles and responsibilities in the research project. Both groups pointed to the importance of earmarked funding for PPI activities. There was a demand for a closer collaboration between researchers and patient organisations to develop accessible tools and effective models for PPI in health research.ConclusionsSurveys among clinical researchers and PPI contributors indicate overall positive attitudes towards PPI in clinical research. However, more resources, such as budget, time, and accessible tools, are needed. Clarifying roles and expectations, and creating new PPI models under resource constraints can enhance its effectiveness. PPI is underutilized in disseminating and implementing research results, presenting an opportunity for improving healthcare outcomes.

Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership

BackgroundPublic and patient involvement aims to improve research quality, relevance, and appropriateness. Despite an increasing evidence base on the influence of public involvement in health research, the role of involvement in methodology research (i.e. research that aims to enhance the quality and rigour of research) is less clear. Using a qualitative case study, we explored public involvement in a research priority-setting partnership in rapid review methodology (Priority III) to give practical insights to inform public involvement in priority-setting for future methodological research.MethodsParticipant observation, documentary analysis, interviews and focus groups were used to explore the processes of Priority III and identify the views and experiences of the participants of a steering group (n = 26) regarding public involvement in Priority III. We used a case study research design and conducted two focus groups with five public partners; one focus group with four researchers; and seven one-to-one interviews with researchers and public partners. Nine episodes of participant observation of meetings were conducted. All data were analysed using template analysis.ResultsThe findings of this case study present three themes and six subthemes:Theme 1 We all bring unique qualities to the table.Subtheme 1.1—Coming from different perspectives towards shared-decision making;Subtheme 1.2—Public partners bring pragmatism and grounding in reality;Theme 2We need support and space at the table.Subtheme 2.1—Define and develop support needed for meaningful involvement;Subtheme 2.2—Creating safe space to listen, challenge and learn;Theme 3 We all benefit from working together.Subtheme 3.1—Reciprocity in mutual learning and capacity building;Subtheme 3.2—Relationships as partners in research, with a feeling of togetherness.Communication and trust, as inclusive ways of working, underpinned the partnership approach to involvement.ConclusionsThis case study contributes to knowledge on public involvement in research by explaining the supportive strategies, spaces, attitudes and behaviours that enabled a productive working partnership to develop between a team of researchers and public partners in this research context.

Guiding, sustainingand growing the public involvement of young people in an adolescent health research community of practice.

Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co-producing a framework, partnership modeland a growing network of young people informing and guiding an adolescent health research community of practice. A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot-testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussionand an online survey. The co-production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. This study investigated the process of co-producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, designand pilot-test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co-production can assist in advancing mutual learning, commitmentand trust in specific adolescent health research contexts. Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co-author.

Missing Persons Alert: Finding the Lost "Person" in Patient-Oriented Research.

After a decade of attempts at patient-oriented research, this article seeks to advance the approach, making individuals and communities active partners in health research. Patient-oriented research remains inconsistently implemented, tokenistic, and met with resistance—largely due to the system in which it was conceived and practiced. Patients remain bound by object-oriented medical cosmologies, thus reaffirming the hierarchical system underpinned by professional dominance. Until health research and researchers develop an awareness of the subtle injustices legitimized by the current approach, patient-oriented research will not actualize its mandate. This article does not challenge the healthcare system as that is beyond its scope; instead, it aims to develop further the “what” and “how” of public involvement in health research through the supplement of participatory research methodologies. In effect, setting the early foundations for transformation and encouraging a transition to a more just and equitable healthcare and research ecosystem.

Patient and Public Involvement in health research: evidence on the practice of participant selection

Abstract Background Research on Patient and Public Involvement (PPI) largely focusses on its aims and methods. Aspects regarding who participates in PPI are largely overlooked, though they may impact considerably on the planning, process and outcomes: who exactly are 'patients and public' in PPI? How are participants selected and why? Are and should participants be representative? Our objective was to explore respective practices and perceptions to inform future PPI. Methods We conducted a systematic database search to select published PPI in medical and health research. Authors of included publications (n = 315) were addressed via an electronic survey, closed and open responses were assessed using descriptive statistics and thematic content evaluation. Results Respondents (40%) reported to have recruited a broad spectrum of participants, often including more than one specific group (56%), e.g. publics with and without topic-wise experience. There were only little differences with respect to selecting participants for different involvement aims and using different recruiting methods. Representativeness was often seen as a crucial recruiting objective (71%), while many considered achieving it (very) difficult (69%). They identified significant respective challenges and desired more guidance on various aspects of planning and conducting PPI (56%). Conclusions Recruiting PPI participants and handling representativeness are controversial and are associated with various obstacles. While few prior studies addressed single related aspects using debates and theory, our results add a more comprehensive and empirical perspective, particularly regarding the (real) relevance of representativeness. Key messages Study authors need to be more systematic and reasonable in selecting PPI participants and in deciding about the need for representativeness. PPI-guidelines should concretize the most relevant steps for planning and conducting participant selection, so that the practice of PPI can be regarded sound and meaningful.

Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach

BackgroundCritical stakeholder-identified gaps in current health research engagement strategies include the exclusion of voices traditionally less heard and a lack of consideration for the role of trauma in lived experience. Previous work has advocated for a trauma-informed, intersectional, and critical reflexive approach to patient and public involvement in health research. The Valuing All Voices Framework embodies these theoretical concepts through four key components: trust, self-awareness, empathy, and relationship building. The goal of this framework is to provide the context for research teams to conduct patient engagement through the use of a social justice and health equity lens, to improve safety and inclusivity in health research. The aim of this study was to revise the proposed Valuing All Voices Framework with members of groups whose voices are traditionally less heard in health research.MethodsA qualitative descriptive approach was used to conduct a thematic analysis of participant input on the proposed framework. Methods were co-developed with a patient co-researcher and community organizations.ResultsGroup and individual interviews were held with 18 participants identifying as Inuit; refugee, immigrant, and/or newcomer; and/or as a person with lived experience of a mental health condition. Participants supported the proposed framework and underlying theory. Participant definitions of framework components included characterizations, behaviours, feelings, motivations, and ways to put components into action during engagement. Emphasis was placed on the need for a holistic approach to engagement; focusing on open and honest communication; building trusting relationships that extend beyond the research process; and capacity development for both researchers and patient partners. Participants suggested changes that incorporated some of their definitions; simplified and contextualized proposed component definitions; added a component of “education and communication”; and added a ‘how to’ section for each component. The framework was revised according to participant suggestions and validated through member checking.ConclusionsThe revised Valuing All Voices Framework provides guidance for teams looking to employ trauma-informed approaches, intersectional analysis, and critical reflexive practice in the co-development of meaningful, inclusive, and safe engagement strategies.Plain English SummaryPatient engagement in health research continues to exclude many people who face challenges in accessing healthcare, including (but not limited to) First Nations, Inuit, and Metis people; immigrants, refugees, and newcomers; and people with lived experience of a mental health condition. We proposed a new guide to help researchers engage with patients and members of the public in research decision-making in a meaningful, inclusive, and safe way. We called this the Valuing All Voices Framework, and met with people who identify as members of some of these groups to help define the key parts of the framework (trust; self-awareness; empathy; and relationship building), to tell us what they liked and disliked about the proposed framework, and what needed to be changed. Input from participants was used to change the framework, including clarifying definitions of the key parts, adding another key part called “education and communication”, and providing action items so teams can put these key parts into practice.

Perspectives on public involvement in health research from Singapore: The potential of a supported group model of involvement.

BackgroundSingapore is an international research hub, with an emphasis on translational clinical research. Despite growing evidence of the positive impact of public involvement (PPI) in research, it remains rare in Singapore.Aims To investigate Singaporean public perspectives around the rationale, role and scope for being involved in health researchTo identify the potential, challenges, facilitators and strategies for implementing PPI in Singapore. DesignSemi‐structured qualitative interviews with members of the public, analysed using thematic framework analysis.ResultsTwenty people participated. Four main themes emerged: potential benefits; challenges; facilitators; and strategies for implementation. Whilst initially unfamiliar with the concept, all interviewees recognized potential benefits for the research itself and those involved, including researchers. PPI was seen to offer opportunities for public empowerment and strengthening of relationships and understanding between the public, academics and health professionals, resulting in more impactful research. Challenges included a Singaporean culture of passive citizenship and an education system that inculcates deferential attitudes. Facilitators comprised demographic and cultural changes, including trends towards greater individual openness and community engagement. Implementation strategies included formal government policies promoting involvement and informal community‐based collaborative approaches.ConclusionGiven the socio‐political framework in Singapore, a community‐based approach has potential to address challenges to PPI and maximize impact. Careful consideration needs to be given to issues of resource and support to enable members of the public to engage in culturally sensitive and meaningful ways that will deliver research best placed to effectively address patient needs.

The complexities of developing equal relationships in patient and public involvement in health research

Health researchers are encouraged to involve patients and the public in each stage of the research process. Patient and public involvement (PPI) seeks to redress an apparent ‘democratic deficit’ in the production of health research. While many claims have been made of the benefits of involving and increasingly co-producing research with patient and public members, it has proven difficult to measure its impact. To inform understanding of why involvement initiatives ‘fail’ or ‘succeed’, this paper focuses on the relational dynamics of PPI and co-production. Through an examination of the discourse of relationships in UK health research guidance it is argued that while emphasis is placed on ‘sharing power’, there persists limited understanding of the constraints of institutional structures and how power asymmetries come to be performed, reinforced or resisted in PPI and co-production settings. To reshape and rethink existing practices I examine the theories that underlie PPI and co-production referring to Habermas’ (The theory of communicative action, Polity Press, Cambridge, 1987) and Mouffe’s (Social Research 66:745–758, 1999; Politica Comun, https://doi.org/10.3998/pc.12322227.0009.011 , 2016) contrasting perspectives on the role of public participation in democratic designs. I suggest that power differentials cannot simply be eradicated or bracketed by guidelines and rhetoric, and that PPI and co-production must be understood as profoundly relational and interactional processes.

Public involvement in health research: what does \u2018good\u2019 look like in practice?

Plain English summaryBackgroundPatient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research.AimThis article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved.What we did and how we did itWe wanted to establish what the literature defines as ‘good’ public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups.FindingsSome of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of ‘good’ involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.BackgroundPatient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers.ObjectiveWe report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes.MethodsA structured review identified research-based principles for ‘good’ public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review.ResultsWe identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five ‘values’ and seven ‘practice principles’ for ‘good’ involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement.ConclusionsOngoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what ‘good’ means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.

Patient and public involvement in health research: A Nordic perspective.

Patient and public involvement (PPI) in health research is of increasing interest internationally, as well as being a means to enhance the quality and relevance of research. PPI was one of the main themes and parallel sessions at The Nordic Health Research and Innovation Networks in Oslo in 2017. In this short comment/debate article, we outline some of the experiences from the event. Importantly, there are many common challenges. More collaboration across the borders could ensure a broader range of experience in the field and provide better ways of developing and evaluating PPI in health research.

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

BackgroundSingapore 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.ObjectiveTo explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore.DesignSemi‐structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis.ResultsWhilst 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.ConclusionThe 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.

Effective involvement: a report on the evaluation of a research awareness training package for public involvement in health research

BackgroundAs the role of Patient and Public Involvement contributors expands to all stages of the research cycle, there is increasing demand for training that meets the needs of this diverse population. To help meet this demand the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, Yorkshire and Humber, worked with members of the public to develop a bespoke training package. The University of Huddersfield’s Public Partnership Group were invited to host the training and undertake an independent evaluation.MethodsParticipatory action research was used to structure the evaluation, such that participants in the training and public members of the evaluation team were co-collaborators with a robust, significant and visible share in the process. This is evidenced by public team members’ roles in undertaking the majority of data gathering, including surveys, non-participant observation and interviews, and analysis, engaging in all reflective discussions, leading on producing a formal report and contributing significant sections of this paper.The evaluation was approved by a University ethics panel.Public involvement consisted of the 13 participants who received the training, and 3 of the 6 members of the evaluation team. Data collection took place between November 2017 and March 2018.ResultsThe evaluation found that participants understood more about the research process from attending the training, gaining greater confidence in their ability to volunteer to get involved. It also highlighted the difficulties of meeting the training needs of a diverse group with varying experiences and expectations. Skilful facilitation was needed to maintain pace, whilst engaging people with different levels of interest and knowledge. The management of the environment to maximise comfort and involvement was important. Early feedback to the delivery team enabled timely updating of the package.Involvement in the evaluation was initially daunting for the three public members of the team, but hugely enjoyable and fulfilling, as well as enriching the process and outcomes. In particular, public involvement in the analysis and interpretation stages increased the authenticity of the evaluation findings.ConclusionsThis evaluation validated the training package and demonstrated the value and impact of Public Involvement at all levels in research.

Patient and public involvement in health research in low and middle-income countries: a systematic review

ObjectivesPatient and public involvement (PPI) is argued to lead to higher quality health research, which is more relatable to and helps empower the public. We synthesised the evidence to look...

Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review.

BackgroundPatient and public involvement in health research is important to produce relevant and impactful results.ObjectiveThis paper aimed to prioritize and summarize Hirschsprung disease (HD)–related information needs among caregivers of children with HD and pediatric surgeons through partnership with a parent-initiated social media campaign.MethodsWe conducted a Web-based survey with the 2 stakeholder groups to identify information needs. The caregiver survey was conducted through a global Web-based community, and the surgeon survey was distributed to members of the Canadian Association of Paediatric Surgeons (CAPS). We conducted a literature review to identify evidence on the prioritized topics.ResultsOur findings showed that 54.9% (89/162) of the individuals completed the caregiver survey and 23.8% (52/218 listed members) of the pediatric surgeons completed the survey distributed through CAPS. Only 20% (18/89) of the caregivers reported being very satisfied or satisfied with the current HD-related resources. A final prioritized list of information needs included bowel management, nutrition and growth, infection, perianal irritation, gastrointestinal pain, surgical diagnostics, and surgical complications. In total, 87 studies were included in the literature review, which included the following: 8 reviews, 2 randomized controlled trials, 74 cohort studies, and 3 practice guidelines. Two priority issues identified by caregivers had only a single study that met the inclusion criteria, whereas 1 topic had none.ConclusionsWith caregiver and surgeon input, we identified 7 information priority areas related to HD. A review of the literature on the priorities found little evidence to support the development of high-quality guidelines. More research is necessary to meet the information needs related to HD as identified by stakeholders.

Diversifying audiences and producers of public involvement in scientific research: the AudioLab

Plain English summaryA partnership between a public engagement specialist, and a director of a digital radio station working towards social change, The AudioLab is a creative and innovative way to support diverse young people to connect with and get actively involved in health research. We worked with 25 creative young adults at relative socioeconomic, educational and/or health disadvantage in 2016 and 2017. Facilitated by the project leads, the emerging young talents connected with science in a series of culturally- and personally-relevant and creative sessions, culminating in their production of digital content and a one-hour live radio show, which reached at least 2324 people online. As a result of taking part in The AudioLab, the young adults felt more confident about themselves and about science; they could see a role for their creative talents in science communication, and felt able to become actively involved in health research. After the project, the ongoing partnership between the project leads and the young adults helped 12 of the participants to progress to employment, training and voluntary roles within health, research, creative and communications environments. We believe that the AudioLab presents a way of working that takes a step towards greater diversity and inclusion among both the audiences and producers of public involvement in health research. It has the potential to be reproduced as a method in other locations.BackgroundThe AudioLab is an innovative way to support greater inclusion in public engagement and involvement in health research. A partnership between a public engagement with research specialist, and a director of a digital radio station working towards social change, The AudioLab piloted an approach working with young people at relative socioeconomic, educational and/or health disadvantage to engage and involve them meaningfully, and sustainably, with health science and research.MethodsTwenty-five young adults from diverse backgrounds took part in AudioLab pilots in 2016 and 2017. Facilitated by the project leads, they engaged with science in a series of culturally-relevant and creative sessions, culminating in their production of digital content and a one-hour live radio show, the latter reaching at least 2324 people online.ResultsYoung adults’ agency within health research and science engagement was increased, with 12 of the participants progressing to roles within health, research, creative and communications environments.ConclusionsThrough partnership working between the project leads, co-production of creative outputs by the young people with scientists and science communicators, and a ‘reimagining’ of the positive assets that diverse young adults bring to engagement with health research, the AudioLab presents a way of working that takes a step towards greater diversity and inclusion among both the audiences and producers of public involvement in health research. Further, the AudioLab has the potential to be reproduced as a method in other locations.

Working with Patients and Members of the Public: Informing Health Economics in Child Health Research.

This paper considers patient and public involvement (PPI) in health economics research and how this might be facilitated. PPI refers to research carried out ‘with’ or ‘by’ members of the public and is now an important aspect of health research policies internationally. Patients and members of the public can be involved in all stages of the research cycle, from establishing whether the topic is important to influencing details of study design, wording of patient-facing documentation and interpretation and dissemination of findings. PPI has become commonplace in health services research. In the context of clinical trials, it has become imperative, with, for example, patients and members of the public informing the selection of outcome measures and recruitment methods, and qualitative research is frequently steered by PPI input regarding the content of interview topic guides and the interpretation of study findings. It is less common for PPI to be explicitly reported in the economic components of health services research. However, we argue that involvement is no less important in this area. The fundamental rationale for involving people in research is that it promotes democratic principles, research quality and relevance to service users. These arguments equally apply to health economics as to other health research disciplines. Our overarching aim in this paper is to show how health economic research might be informed by PPI. We report our experiences of PPI via case studies in child health, reflect on our learnings, and make suggestions for future research practice. Plain Language Summary This paper considers how to involve patients and members of the public in health economics research.Health economists often carry out research into the value for money (sometimes called ‘cost effectiveness’) of new ways of treating people. This can help in decisions about which treatments are publically funded. In an economic evaluation, the economist identifies and values the key things used to treat someone who is unwell. They also have to measure how unwell that person is and whether their health changes with treatment. They do this by asking them questions about how they rate specific aspects of their health. Economists compare costs and health outcomes of different treatments. Patient and public involvement in health research is really important because the public fund health systems (through taxation in the UK) and benefit from healthcare. This paper shares our ideas on and experiences involving the public in health economic research studies. All our examples come from the involvement of children and/or parents. We think our approaches would also apply to adults.

Public involvement in health research systems: a governance framework

BackgroundGrowing interest in public involvement in health research has led to organisational and policy change. Additionally, an emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity. Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance.MethodsWe drew on an established health research system framework to analyse governance functions related to public involvement, adapting scoping review methods to identify evidence from a corpus of journal papers and policy reports. We drew on the logics of aggregation and top down configuration, using a qualitative interpretive approach to combine and link findings from different studies into framework categories.ResultsWe identified a total of 32 scholarly papers and 13 policy reports (n = 45 included papers) with relevance to governance for public involvement. Included papers were broadly consonant in identifying the need for activity to specify and support public involvement across all four governance functions of stewardship, financing, creating and sustaining resources, and research production and use. However, different visions for public involvement, and the activity required to implement it and achieve impact, were particularly evident with respect to the stewardship function, which seeks to set overall directions for research while addressing the potentially competing demands of a system’s many constituents.ConclusionsA governance perspective has considerable value for public involvement in health research systems, supporting efforts to coordinate and institutionalise the burgeoning public involvement enterprise. Furthermore, it highlights challenges for what is, ultimately, a highly political intervention, suggesting that diverse publics must be both involved within health research systems and enrolled as governors of them.

Using the Public Involvement Impact Assessment Framework to assess the impact of public involvement in a mental health research context: A reflective case study.

BackgroundWe assess the utility of the Public Involvement Impact Assessment Framework (PiiAF) as a resource to support research teams in assessing the impact of Public Involvement across diverse research and public involvement (PI) contexts. PiiAF was developed in response to a well‐documented growth in Public Involvement in health research in the United Kingdom that demands a more sophisticated evidence base to demonstrate its impact.DesignWe used a reflective case study approach drawing on contemporaneous meeting notes, PiiAF website resources and retrospective reflections to describe how PiiAF helped us to develop an impact assessment plan of the PI in a university‐based mental health research centre.DiscussionWe consider key aspects of our experiences of using PiiAF as a tool to help us design an impact assessment of PI, interpret these experiences with reference to relevant theory and research and share insights that may be useful to other teams considering using PiiAF.ConclusionThese insights include understanding the commitment of time and effort required to develop effective PI impact assessment plans; the flexibility of PiiAF and its ability to be used in a range of research and PI contexts; and the advantages of involving all stakeholders (including the public) in the development of an PI assessment plan.