Exploring the potential for public involvement in health research in Singapore

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.

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.

BackgroundResearch involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively.ObjectiveTo design a search filter to identify literature where patient and public involvement (PPI) was used in health research.MethodsA reference standard of 172 PPI papers was formed. The references were divided into a development set and a test set. Search terms were identified from common words, phrases and synonyms in the development set. These terms were combined as a search strategy for medline via OvidSP, which was then tested for sensitivity against the test set. The resultant search filter was then assessed for sensitivity, specificity and precision using a previously published systematic review.ResultsThe search filter was found to be highly sensitive 98.5% in initial testing. When tested against results generated by a ‘real‐life’ systematic review, the filter had a specificity of 81%. However, sensitivity dropped to 58%. Adjustments to the population group of terms increased the sensitivity to 73%.ConclusionThe PPI filter designed for medline via OvidSP could aid information specialists and researchers trying to find literature specific to PPI.

Background and aimPatient and public involvement (PPI) has potential to enhance health‐care research and is increasingly an expectation, particularly for many funding bodies. However, PPI can be tokenistic, which may limit this potential. Furthermore, few studies report PPI processes and impact, particularly in doctoral research studies, which are seldom reported in peer‐reviewed papers. The aim of this paper was to explore the impact of PPI on two health‐related doctoral research studies and identify how PPI could be used meaningfully at this level.MethodThe PPI processes included (a) involvement of two ‘Research Buddies’ who informed the research design and ensured implementation of a booklet intervention was feasible for family carers, (b) data analysis workshops with ‘Research Buddies’ to identify emerging themes from practitioner interviews, (c) public and stakeholder involvement who informed data collection tool design, and the design of an intervention to help people with obesity who attend weight loss groups.FindingsThe application of PPI enhanced both doctoral studies by assisting data analysis; problem solving and improving recruitment rates; improving the usability and appeal of data collection tools and interventions; and developing implementation strategies. Patient and public involvement was considered a rewarding experience for both researchers and PPI contributors.ConclusionThis paper demonstrates the value of PPI in doctoral research in relation to its impact on research processes, researchers and contributors. We also present recommendations on how PPI could be incorporated into future doctoral research, including resources required, planning PPI processes and involving PPI contributors in all stages of research.

Patient and public involvement (PPI) is an expectation and requirement of health and social care research within the United Kingdom. Although there is available guidance on how to practice PPI, to date there have been no frameworks or resources available specifically for PPI in rapid evidence syntheses, where work can be completed in as little as two or three weeks. Our objective was to design a framework to support those doing rapid evidence syntheses to include PPI in their work. We developed the framework across three stages. First, we undertook a scoping review of published PPI frameworks in health and social care (N = 53) and a survey of key interest-holders (N = 101). The results of these alongside an online workshop with 15 interest-holders (researchers, members of the public, policymakers, PPI professionals) in November 2024 informed the initial development of the framework. We evaluated the draft framework at a second online workshop with 16 interest-holders in January 2025. We analysed the findings from this second workshop to further refine the framework. The Rapid Involvement of Patients and the PubLic in Evidence Synthesis (RIPPLES) framework guides PPI in rapid evidence syntheses through three interconnected layers: core guiding principles of the UK Standards for Public Involvement at the centre; building continued approaches to patient, public and community engagement; and steps for embedding PPI into individual rapid evidence synthesis projects. An accompanying guidance document and worksheet to plan PPI activities were also developed to aid researchers in using the framework. RIPPLES is the first framework to provide practical and pragmatic guidance on how to embed PPI within rapid evidence synthesis. The framework will undergo evaluation and refinement, including development of public-facing materials and case studies to supplement current resources.

To shape an intergenerational engagement (IE) intervention through consultation with a patient and public involvement (PPI) group. This paper describes how PPI contributed to refining an IE intervention within a long-term care facility in China. A PPI group composed of key stakeholders, including older residents of the long-term care facility, young people from a local school, a parent, and care facility staff, provided evaluative feedback. They reviewed and refined various aspects of the intervention (content, scheduling and delivery of the intergenerational activities) and its evaluation (design, recruitment strategies and study materials). Key modifications included adjusting activities to accommodate diverse backgrounds and technological capabilities, space limitations and the number of participants to optimise engagement and focusing on group activities to encourage lively and inclusive interactions. The group also made recommendations relating to scheduling sessions, length of intervention and recruitment materials to facilitate greater accessibility. The integration of PPI made the IE intervention practical, culturally relevant and tailored to meet the diverse needs of older and younger participants, enhancing its feasibility, acceptability and overall effectiveness. The findings underscore the importance of early and continuous PPI in health and social care research to develop relevant and sustainable interventions. Future efforts should focus on policy support, funding and education to embed PPI more broadly into health and social care research in China. Feedback was sought from a patient and public involvement (PPI) group to refine and enhance the intergenerational engagement (IE) intervention, ensuring it accurately reflected the needs of participants. Notably, to the best of the authors' knowledge, this study is the first in China to utilise PPI in the co-design of an IE intervention in a long-term care setting, offering valuable insights for future research and practice in this context.

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.

BackgroundRandomised controlled trials (RCTs) are considered particularly likely to benefit from patient and public involvement (PPI). Decisions made by professional researchers at the outset may go on to have a...

Background Patient and public involvement (PPI), inclusion of members of the public as active partners in the research process, can be a requirement of research funding. Limited evidence has suggested that clinical trials may be particularly likely to benefit from PPI. There is a lack of critical assessment of PPI and suggestions in the literature of selective reporting of its benefits. This study aims to increase the knowledge of PPI in clinical trials by systematically investigating how it is approached within a cohort of public funded randomised trials in the UK. Methods Documentation from the application process for all randomised trials funded by the National Institute for Health Research Health Technology Assessment (NIHR HTA) programme between 2006 and 2010 were obtained. Data relating to PPI activity and how these plans were assessed within the peer review process were extracted. Results Documentation to allow details of planned PPI activity to be extracted were available in 107 RCTs. PPI representation was not described in 15% with representation on TSCs, DMCs, and TMGs described in 53%, 8%, and 12% of applications respectively. A consultancy approach was described in 26%. Of the 515 reviewers comments across the trials only 211(41%) commented on PPI plans. The majority repeated the PPI plans from the application rather than commenting on their suitability. Conclusions Research applicants frequently describe PPI but reviewers seem unable to comment on suitability of the approach. Evidence of impact is needed to inform future approaches for applicants and peer reviewers.

CN37 Patient and public involvement in research: Reflections and experiences of doctoral cancer nurse researchers in Europe

Objective We compared the reporting of patient and public involvement (PPI) in the development of clinical practice guidelines (CPG) with the guidance regarding PPI in the auspicing organisation's guideline development manual. Methods We examined the PPI guidance provided by seven guideline auspicing organisations from four countries, that provided guideline development manuals referencing PPI inclusion in guideline development. We determined whether the auspicing organisations provided guidance on four aspects of PPI critical to understanding the process; (i) which patients and public (PPs) to involve, (ii) how to recruit PPs, (iii) where in the process to involve PPs, and (iv) how PPs should contribute to guideline development. We assessed a random selection of 24 CPGs affiliated with these organisations for consistency of reporting of PPI with the guidance provided. Results Half (50%) of the auspicing organisations' guideline development manuals provided guidance on all four aspects of PPI. Five of the 24 CPGs (21%) affiliated with auspicing organisations that made reference to PPI in guideline development did not report PPI in their development. Although 79% (19/24) of guidelines did report PPI in their development, only half (10/19) reported PPI that was consistent with the auspicing organisations guidance. Conclusion Auspicing organisations often do not provide guidance to guideline developers on critical aspects of PPI. Even when auspicing organisations do provide guidance, CPG developers may not report PPI, and/or not report PPI consistent with that guidance. It is unknown whether this is because PPI was not conducted, or because it was conducted, but not reported, or was reported incompletely. Practice Implications Auspicing organisations need to improve guidance on PPI in guideline development, and CPG developers need to report PPI more diligently when it is done. Understanding guideline developers' motivations for PPI implementation and/or reporting is critical to facilitate improvement in this area.

IntroductionPatient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory‐based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study.MethodsSemi‐structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically.FindingsNine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab‐based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research.ConclusionsWhile traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work.Patient or Public ContributionThis study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5‐year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co‐authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

ABSTRACTIntroductionThe United Kingdom National Institute for Health and Care Research (NIHR) allocates funding and provides infrastructure, training and capacity building for research. NIHR expects that patient and public involvement (PPI) is embedded within research it supports. There is a need to understand more about what guidance is offered to researchers across PPI frameworks. This rapid scoping review aimed to identify and clarify PPI frameworks for health and care research.ObjectiveTo identify and explore the scope and key features of frameworks for PPI in health and social care research.MethodsWe undertook a rapid scoping review, conducing searches on MEDLINE, CINAHL and PsycInfo for relevant records indexed from 2013 to August 2024. After piloting to refine eligibility and ensure consistent decision‐making, a single reviewer screened titles and abstracts and then full‐texts, with another checking a proportion for accuracy. A data charting form was piloted. Two reviewers charted all eligible frameworks, and a third checked accuracy. We synthesised data using graphs and tables and provided a narrative of results.ResultsWe included 53 frameworks from 55 reports. Most suggested they were applicable across types of health or social care research (N = 30), influencing different stages of the research process (N = 39). Most were developed in the UK (N = 28). Most frameworks did not specify how to find patients or members of the public (N = 36), whether PPI should be one‐time or continuous (N = 34), or how direct any interaction between patients and the public and researchers should be (N = 33). Eighteen frameworks suggested that patients and the public could have different levels of control over research. Most frameworks (N = 49) suggested ways to meet one or more of the UK Standards for Public Involvement. Few suggested ways in which equity or diversity could be considered in PPI, according to PROGRESS‐Plus domains.ConclusionsFuture frameworks should provide clear, practical guidance to researchers on how to involve people in different types of health and social care research, including how to approach different groups and consider equity and inclusivity within PPI.

Public and Patient Involvement (PPI) refers to the active collaboration of patients and the public in health and social care research decision-making, enhancing research success, cost-effectiveness, and impact. Children, young people, and their families bring unique lived experiences to PPI in research, relating to others with similar experiences, while factors like age, cognitive maturation, and developmental stage create differences between researchers and patients or the public. Collaboration with children, young people, and their families should be guided by specific project context and a strong evidence base. However, existing systematic reviews reveal inconsistencies in reporting and a lack of standardised methods for these groups, limiting effective PPI implementation. This protocol details methods for an umbrella review to identify the current state-of-science and future priorities for collaborating with children, young people and families in health and social care research. The protocol was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) guidelines, which will also direct the reporting of findings. The Joanna Briggs Institute's methodology for conducting umbrella reviews will be adhered to throughout. MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane, DARE, JBI Evidence Synthesis, PROSPERO, grey literature databases, targeted international networks, and the Google search engine will be searched for systematic reviews on PPI with children, young people, and families in health and social care research. Two reviewers will independently conduct eligibility screening, data extraction, and quality appraisal. This umbrella review will provide critical insights into the state-of-science of PPI with children, young people and families in health and social care research. The synthesis of findings could yield important information for researchers and other stakeholders conducting health and social care research in collaboration with children, young people and families by highlighting key patterns, gaps, and recommendations to guide future PPI practices, policies, and research. This umbrella review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (Prospero registration number: CRD42024608935, registered 14th of November 2024).

Background: Growing consensus supports public and patient involvement (PPI) in research as the lived experience of patients, family carers and users of health and social care services bring unique insights to healthcare research. The impact and burden of stroke present ongoing challenges for those living with its consequences and could potentially limit PPI activity. This review aims to explore PPI in published stroke research to identify and describe the extent, nature and design of PPI activities, the type/s of studies involved and the profile of PPI participants engaged in stroke research. Methods: This systematic scoping review, guided by the Arksey & O’Malley five step framework, will be reported according to the PRISMA-ScR reporting guidelines. PPI is embedded at each stage of this proposed scoping review from conceptualisation, participation, contribution and collaboration. The Population, Concept, Context (PCC) structure defines the research question which asks - How is PPI in stroke research currently being conducted and how do the study authors report their PPI activities and its impact? A comprehensive range of electronic databases including PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews will generate a broad range of studies. Grey literature (e.g. OpenGrey, Lenus) and internationally recognised stroke organisation websites will be searched for additional research reports. Data extraction will adhere to the Joanna Briggs Institute guidelines, with results collated and mapped to the research cycle stage/s. Conclusions: The outlined scoping review protocol will comprehensively identify and map the existing scientific literature that reports PPI in stroke research. Findings will be presented in relation to PPI conceptualisation, participant profiles and activities in stroke research, volume, type and range of approaches. Knowledge gaps may be identified thereby offering opportunities and recommendations for future priorities for PPI in stroke research.