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Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients’ experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and treatment methods, bring meaningful outcomes that could meet their expectations, needs and preferences, reduce health care costs, and improve dissemination of research findings. It is essential to ensure competence of the research team by capacity building with available resources on PPI. This review summarizes practical resources for PPI in various stages of research projects—conception, co-creation, design (including qualitative or mixed methods), execution, implementation, feedback, authorship, acknowledgement and remuneration of patient research partners, and dissemination and communication of research findings with PPI. We have briefly summarized the recommendations and checklists, amongst others, for PPI in rheumatic and musculoskeletal research (e.g. the European Alliance of Associations for Rheumatology (EULAR) recommendations, the Core Outcome Measures in Effectiveness Trials (COMET) checklist and the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist). Various tools that could be used to facilitate participation, communication and co-creation of research projects with PPI are highlighted in the review. We shed light on the opportunities and challenges for young investigators involving PPI in their research projects, and have summarized various resources that could be used to enhance PPI in various phases/aspects of research. A summary of web links to various tools and resources for PPI in various stages of research is provided in Additional file 1.

Patients and members of the public are the end users of healthcare, but little is known about their views on the use of artificial intelligence (AI) in healthcare, particularly in the Japanese context. This paper reports on an exploratory two-part workshop conducted with members of a Patient and Public Involvement Panel in Japan, which was designed to identify their expectations and concerns about the use of AI in healthcare broadly. 55 expectations and 52 concerns were elicited from workshop participants, who were then asked to cluster and title these expectations and concerns. Thematic content analysis was used to identify 12 major themes from this data. Participants had notable expectations around improved hospital administration, improved quality of care and patient experience, and positive changes in roles and relationships, and reductions in costs and disparities. These were counterbalanced by concerns about problematic changes to healthcare and a potential loss of autonomy, as well as risks around accountability and data management, and the possible emergence of new disparities. The findings reflect participants' expectations for AI as a possible solution for long-standing issues in healthcare, though their overall balanced view of AI mirrors findings reported in other contexts. Thus, this paper offers initial, novel insights into perspectives on AI in healthcare from the Japanese context. Moreover, the findings are used to argue for the importance of involving patient and public stakeholders in deliberation on AI in healthcare.

ObjectiveIn 2014/2015, The BMJ and Research Involvement and Engagement (RIE) became the first journals to routinely include patients and the public in the peer review process of journal articles. This survey explores the perspectives and early experiences of these reviewers.DesignA cross-sectional survey.Setting and participantsPatient and public reviewers for The BMJ and RIE who have been invited to review.ResultsThe response rate was 69% (157/227) for those who had previously reviewed and 31% (67/217) for those who had not yet reviewed. Reviewers described being motivated to review by the opportunity to include the patient voice in the research process, influence the quality of the biomedical literature and ensure it meets the needs of patients. Of the 157 who had reviewed, 127 (81%) would recommend being a reviewer to other patients and carers. 144 (92%) thought more journals should adopt patient and public review. Few reviewers (16/224, 7%) reported concerns about doing open review. Annual acknowledgement on the journals’ websites was welcomed as was free access to journal information. Participants were keen to have access to more online resources and training to improve their reviewing skills. Suggestions on how to improve the reviewing experience included: allowing more time to review; better and more frequent communication; a more user-friendly process; improving guidance on how to review including videos; improving the matching of papers to reviewers’ experience; providing more varied sample reviews and brief feedback on the usefulness of reviews; developing a sense of community among reviewers; and publicising of the contribution that patient and public review brings.ConclusionsPatient and public reviewers shared practical ideas to improve the reviewing experience and these will be reviewed to enhance the guidance and support given to them.

Patient and public involvement and engagement (PPIE) is crucial for developing patient-centered healthcare research and improving health outcomes. While patient-reported outcome measures (PROMs) capture patients’ perspectives, meaningfully engaging patients in PROMs initiatives remains a challenge. This short report details the establishment and evolution of the Alberta PROMs and EQ-5D Research and Support Unit Patient Engagement Network (APERSU-PEN), a unique model designed to embed patient expertise and share practices throughout patient communities. Unlike many patient engagement groups focused on specific conditions, APERSU-PEN broadly integrates patient perspectives across the healthcare system. The network intentionally recruited experienced patient partners with advocacy and research backgrounds from targeted health and patient organizations. This approach enabled diverse representation and facilitated broad dissemination of PROMs awareness to various patient communities. This broad integration has most recently supported PROMs use in primary care. Key activities include the co-development of patient-friendly PROMs educational materials and active contributions sharing PROMs stories and experiences at various forums, supporting patient understanding and aiming to improve completion rates. The paper highlights challenges and their solutions, such as the broad scope of APERSU’s work, which was addressed by building this network. A critical success factor has been dedicated funding for the involvement of patients as partners, ensuring sustainable engagement and participation in external events. Flexible meeting options and cloud-based document sharing also accommodate busy schedules and geographical dispersion. APERSU-PEN exemplifies a transformative shift in healthcare culture and practice, where patients are recognized as “true end-users” of PROMs. This environment of mutual learning and respect between patients and researchers enhances the relevance and impact of PROMs. The model offers transferable guidance for other initiatives seeking to integrate PPIE meaningfully, ultimately increasing awareness of PROMs throughout patient communities. Future directions include evaluating member experiences and expanding diversity within the network to further strengthen patient engagement in PROMs and APERSU’s support services.

Background While there are increasing calls for Public and Patient Involvement and Engagement (PPIE) in methodology research, including the development of reporting guidelines, practices continue to emerge. This paper reports on the process, experiences, reflections, and recommendations of both the PPIE partners and other researchers participating in the development of (Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) and Consolidated Standards of Reporting Trials (CONSORT)-Surrogate reporting guidelines. Methods Development of the SPIRIT- and CONSORT-Surrogate guidelines involved four phases: (1) literature reviews; (2) an e-Delphi survey; (3) a consensus meeting, and (4) knowledge translation. PPIE was integrated in Phases 2, 3 and 4. An encompassing budgeted PPIE strategy detailing involvement in all project phases was prepared and implemented by researchers and PPIE partners. Implementation included a learning workshop (attended by 19 PPIE partners) to build PPIE partners’ capacity and confidence to participate in the e-Delphi survey (Phase 2) and the invitation of four PPIE partners to the consensus meeting (Phase 3). Experiences and reflections of PPIE in the project, based on feedback surveys from PPIE partners participating in the project and reflective notes from meetings, were used to formulate recommendations. Results In total, 19 PPIE partners took part in the e-Delphi survey (Phase 2), four joined the consensus meeting (Phase 3), and consequently co-authored the guidelines and contributed to the development of an educational animation video (Phase 4). Partners felt that facilitators for involvement in Phase 2 included a learning workshop, financial compensation, support during e-Delphi survey participation (such as a glossary and help texts) and for Phase 3, the main facilitator was allowing partners to contribute first during the consensus meeting. The PPIE partners who joined the consensus meeting (Phase 3) presented the patient perspective; reminded researchers of why the project was important; helped with clarification of issues; corrected grammar; suggested strategies to disseminate and implement the extensions; and created humour. Reflecting on the involvement, both the PPIE partners and researchers felt it was valuable to the project. Conclusions Based on the experiences, we make six recommendations for integrating PPIE in projects to develop reporting guidelines: involve early; involve with a plan and layered approach; involve meaningfully in a genuine way; involve with support and in safe spaces; involve with reflection and feedback; and involve with a budget to compensate for time and effort. Plain English summary This study looked at how patients and the public can be helpfully included in creating guidelines for reporting medical research. In the past, these research guidelines have been created only by scientists; however, involving patients and the general public is increasingly viewed as helpful for everyone in helping to ground guidelines in reality. The researchers created a detailed plan explaining exactly how people would be involved, particularly in the two main activities: a survey to gather opinions and a meeting to discuss the final decisions on the guidelines. To prepare patients and members of the public, researchers held a workshop attended by 19 people, most of whom then participated in the survey. Four of those who participated in the survey joined a meeting to finalise the guidelines, actively contributing patient viewpoints. These partners became co-authors of the final guidelines and helped create an educational video explaining the guidelines’ importance. The involvement of patients and members of the public was successful because of supportive measures like preparatory workshops. Both researchers and patient partners agreed that the involvement was helpful and improved the final guidelines. Based on their experience, the researchers suggest six practices: involve patients from the beginning; create a clear involvement plan; ensure participation is valuable; provide enough support and create a welcoming environment; regularly gather feedback on the process; and budget well to pay for participants’ time fairly.

Background Supporting participation decisions and experiences in clinical trials is a persistent challenge that could be improved by two areas: patient engagement (PE), which involves actively collaborating with patients to enhance research relevance and value, and shared decision-making (SDM), which involves helping individuals make evidence-informed, values-based decisions about participation. The extent to which PE and SDM have informed trial recruitment interventions has not been synthesized. Objectives We aimed to explore (1) how PE informed recruitment interventions, both in general and among equity-deserving populations, and whether demographic differences existed between studies using and not using PE, and (2) how SDM has informed recruitment interventions, both in general and among equity-deserving populations. Methods We identified randomized and quasi-randomized recruitment intervention studies from a prior Cochrane review and the Online Resource for Research in Clinical triAls database. We assessed recruitment interventions for reporting of PE and coded the level at which PE occurred (‘substantive engagement’, ‘limited engagement’, ‘both’, ‘unclear’, or ‘no engagement’) and the areas in which PE occurred (development of the research question, intervention design, selecting outcomes, dissemination/implementation, or ‘other’). We coded SDM across six domains: providing information about options, probabilities, clarifying outcomes, guidance in deliberation, using evidence, and disclosure and transparency. Results Of the 122 recruitment intervention studies included, 37 (30.3%) reported PE, although limited engagement was most common ( n  = 22; 59.5%). PE was most often used in designing the recruitment intervention ( n  = 32; 86.5%) followed by ‘other’ ( n  = 11; 29.7%; e.g., PE supporting participant recruitment efforts), developing the research question ( n  = 2; 5.4%), selecting outcomes ( n  = 3; 8.1%), and dissemination/implementation ( n  = 3; 8.1%). SDM was occasionally reported ( n  = 25; 20.5%), most commonly as ‘providing information about options’ ( n  = 11; 9.0%). Equity-deserving populations were the focus of 24 studies (19.7%); 11 of these also used PE (9.0%). Conclusions Efforts to improve trial participation have not been informed by literature around patient lived experiences. Recruitment interventions infrequently reported any PE and occasionally mentioned SDM. When PE was mentioned, it was usually limited. These results hold among studies involving equity-deserving populations. Greater consideration of PE and SDM could enhance trial recruitment, research impact, trial participation experiences, and equity in trial recruitment. Plain English abstract Background Getting people to participate in clinical trials is challenging. Two approaches that can help are working closely with patients to ensure the research is important to them (called patient engagement, or PE) and helping them understand their options to make informed choices about whether to participate (called shared decision-making, or SDM). Objectives We wanted to find out how PE and SDM are used when recruiting people for trials in general and when recruiting populations that are often left out of trials. We also wanted to find out the differences between studies that use PE and those that do not. Methods We reviewed studies about how people are recruited into trials. We checked whether these studies used PE, how engaged patients were (ranging from very engaged to not engaged at all), and where they were engaged, such as helping to choose the research question or sharing results. We also reviewed how SDM was used, such as providing information about options or using evidence to help people decide. Results Of 122 studies, only 37 mentioned PE, mostly at low levels of engagement. PE was mostly used to help design the recruitment strategy. Only 25 studies mentioned SDM, mainly by providing people with information. Only 24 studies focused on groups that are often overlooked, and only 11 of these used PE. Conclusions Most efforts to ask people to join trials have not reflected patients’ real-life experiences. Using PE and SDM more effectively could help more people participate and lead to fairer recruitment.

Health research increasingly incorporates public and patient involvement (PPI) to enhance trial inclusivity and relevance, and it is often mandated by funding and regulatory bodies. PPI boosts public engagement with trials and aligns trial objectives more closely with the priorities of the groups they aim to benefit. The Kid’s Trial, an online randomised trial co-created with children, aims to help them better understand what randomised trials are, why they matter, and improve their critical thinking skills. To ensure inclusivity and relevance, we established two PPI groups: the Children’s Research Advisory Group (CRAG) and the Parents’ Research Advisory Group (PRAG). We recruited a representative sample of children and parents from diverse ethnic, geographic, and socioeconomic backgrounds to reflect the trial’s target demographic. We engaged PPI group members through social media and email campaigns aimed at parents of children aged 7 to 12. PPI meetings were conducted online, followed set agendas, and included real-time trial updates, post-meeting feedback surveys, and polls. A PPI compensation plan was established in advance. Online interviews later captured their insights and experiences as PPI partners. Seven family units, comprised of eight children and seven parents, were recruited over 15 weeks from six countries. PPI partners shaped the trial design by contributing to website animations, aesthetic changes, and language adaptations. Interviews were analysed using reflexive thematic analysis to explore the facilitators, challenges, and outcomes of participating in our online research advisory groups. Reflections from researchers and PPI partners demonstrated that participation in the advisory groups enhanced children’s learning and confidence. Many members, including children and adults, experienced unexpected positive outcomes, such as increased scientific literacy, science communication and confidence. Their involvement meaningfully shaped the trial’s development and processes. This study also provides guidance for researchers engaging similar demographics in future PPI activities. Plain English summary Health research now often includes input from the public and patients (Patient and Public Involvement or PPI) to make studies more inclusive and useful. Many funding and regulatory organisations require this. When the public is involved, research studies become more relevant to the people they aim to help. The Kid’s Trial is an online study designed with children to teach them how health research works and help them think critically about health information they encounter. To make sure The Kid’s Trial was inclusive and meaningful, we created two PPI groups made up of children and their parents to help us design it. We used social media and email to recruit a diverse group of children and parents from different backgrounds. These groups met online to discuss the trial, make improvements, and give feedback. They worked on the website, website animations, trial design, and the language we used. The PPI group members were compensated for their time. Seven family units, consisting of eight children and seven parents from six countries, joined the PPI groups. We interviewed group members to understand what worked well, what was challenging, and what they gained from participating in the PPI groups. Children felt that their confidence and learning had improved. Many PPI group members experienced unexpected benefits. Their input significantly influenced the design of The Kid’s Trial. This study also offers valuable advice for researchers seeking to include children and parents as PPI partners in future studies.

The digitalisation of health data has helped drive initiatives like the Scottish Collaborative Optometry-Ophthalmology Network eResearch (SCONe), which links retinal images from community optometry practices with other routinely collected health data to enhance disease detection. As data-driven approaches expand throughout the healthcare system, patient and public involvement and engagement (PPIE) is increasingly recognised as essential for improving the quality, relevance, and acceptability of health research. However, despite growing endorsement, challenges remain, including inconsistent terminology, varying levels of involvement, limited implementation guidance, and a lack of evidence on its impact. These challenges are even more pronounced in data science, particularly within large-scale research, where PPIE is often underreported, leaving the field without a clear framework for meaningful implementation. This article offers a reflective account of the challenges and barriers encountered by SCONe in developing a PPIE strategy. By documenting this process, it provides insights into the complexities of implementing PPIE in large research consortia and offers practical guidance for future initiatives seeking to enhance the impact and relevance of public partnerships in large scale data science research. Plain English summary Healthcare is increasingly using digital technologies to improve treatments and understand diseases better. One example is the Scottish Collaborative Optometry-Ophthalmology Network eResearch (SCONe), which collects retinal images from optometry clinics across Scotland and links them with health data. A key feature of SCONe is its use of retinal images collected over time, which helps researchers track changes in diseases like macular degeneration and even conditions such as dementia. As projects like SCONe grow, it is becoming more important to involve patients and the public in research—known as patient and public involvement and engagement (PPIE). This ensures studies are relevant, trustworthy, and useful for the people they aim to benefit. However, there are challenges, such as unclear terminology, differences in how much influence the public has, and a lack of guidance on how best to involve people. These challenges are even greater in large-scale research projects like SCONe, where the complexity of the work can make collaboration between researchers and the public difficult. Despite its importance, PPIE in large-scale studies is often underreported, making it harder to create clear ways to involve people meaningfully. This article shares the experience of working with the public to develop and implement a PPIE strategy for SCONe. By discussing these challenges and lessons learned, we hope to encourage other research projects to recognise the value of public involvement and help build better approaches for including the public in health data research.

Professional advisory groups, with patient and public involvement (PPI) representatives, can be used for co-production within research projects. This paper aims to document the benefits and challenges of undertaking stakeholder and participant engagement for an implementation research project within NHS (National Health Service) Wales. A patient focused research project, initiated by clinicians, on the use of patient empowerment tools within standard patient care, used a professional advisory group to identify appropriate tools to use within the research proposal. The professional advisory group was made up of therapists, NHS stakeholders, academics and PPI representatives. A hybrid-meeting style was employed to optimise participation for all members of the group. Benefits of the professional advisory group included increased engagement and ownership of the study due to co-creation, and obtaining important contextual information and lived experience. However, challenges included keeping the discussion on topic due to pre-conceived agendas, pleasing everyone in the room due to varied backgrounds, and technological issues. Future professional advisory groups should consider how to facilitate the full involvement of PPI representatives within the discussion and having a variety of resources to present the topic of discussion. Furthermore, clearly communicating what the purpose and direction of the research project is and how it fits into the wider system, should be carefully considered. Overall, it was recognised that the professional advisory group was of significant value to shape the research proposal. Due to the situational challenges faced by healthcare professional within the NHS and preconceived ideas for solutions, it is hoped that by involving stakeholders early in the process there will be greater acceptance and usability of the research findings.

Background The 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. Methods We 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. Results Forty-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. Conclusions The 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.