Public Involvement In Research Research Articles

Listening to the Voice of the Patient in RSV Research.

Patient and public involvement in research refers to patients or caregivers with disease experience contributing to the design, conduct or dissemination of results from research. Patient and public involvement has given rise to new fields in healthcare-oriented research and has the potential to transform infectious diseases through interventional trials. Our recommendations and best practices from years of organizing respiratory syncytial virus parent networks are provided.

“I am there just to get on with it”: a qualitative study on the labour of the patient and public involvement workforce

BackgroundWorkers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organizational landscape for applied health research in the United Kingdom. Even as the National Institute for Health and Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the United Kingdom, considerable barriers remain to embedding substantive and sustainable public input in the design and delivery of research. Notably, researchers and clinicians report a tension between funders’ orientation towards deliverables and the resources and labour required to embed public involvement in research. These and other tensions require further investigation.MethodsThis was a qualitative study with participatory elements. Using purposive and snowball sampling and attending to regional and institutional diversity, we conducted 21 semi-structured interviews with individuals holding NIHR-funded formal PPI roles across England. Interviews were analysed through reflexive thematic analysis with coding and framing presented and adjusted through two workshops with study participants.ResultsWe generated five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI work as more than a job; (iv) accountability without control; and (v) delivering change without changing.ConclusionsThe NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, but rather to its displacement and – potentially – its intensification. We suggest that the expectation to “deliver” PPI hinges on a paradoxical demand to deliver a transformational intervention that is fundamentally divorced from any labour of transformation. We conclude that ongoing efforts to transform health research ecologies so as to better respond to the needs of patients will need to grapple with the force and consequences of this paradoxical demand.

Mandating patient and public involvement in research: is it cause for concern?

BACKGROUND: Public and Patient Involvement [PPI] is a relatively new concept within the field of research. However, it involves a process whereby service users/patients are involved in every step of the research process. Recently, The Lancet Psychiatry and the Journal of Mental Health released a mandate for all future submissions to have PPI representation clearly documented in the manuscripts. This, although welcome, raises the fear of tokenistic practices in research production and dissemination. This has resulted in a space of contentious fluidity developing as researchers and indeed PPI representatives struggle to ascertain what exactly PPI is all about. Only when these questions are answered, will we, as scholars, determine whether to actively use the approach or let it die off like a burnt out candle

Value in care: The contribution of supportive care to value-based lung cancer services-A qualitative semistructured interview study.

Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value-based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value-based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Data analysis generated three key themes: valued components of care; benefits of receiving valued care componentsand consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person-centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value-based care. This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value-based cancer care. This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co-design approaches are embedded in our work.

The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.

Patient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players' who live with a spinal cord injury on PPI in pre-clinical research. Semi-structured interviews were conducted via telephone with 11 seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically. Six themes were identified during analysis: 'appreciating potential benefits of PPI despite limited knowledge', 'the informed perspectives of people living with spinal cord injury can improve pre-clinical research relevance', 'making pre-clinical research more accessible reduces the potential for misunderstandings to occur', 'barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative', 'personal contact and dialogue helps people feel valued in pre-clinical research, and 'PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.' People affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.

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

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

Public involvement in Australian clinical trials: A systematic review.

Public involvement enhances the relevance, quality, and impact of research. There is some evidence that public involvement in Australian research lags other countries, such as the United Kingdom. The purpose of the systematic review was to establish the rates and describe the characteristics of public involvement in Australian clinical trials. We reviewed evidence of public involvement in all Australian randomised controlled trials published in the first 6 months of 2021. To determine the quality of public involvement, we used the five-item short-form version of the Guidance of Reporting Involvement Patients and the Public, version 2. In total, 325 randomised controlled trials were included, of which 17 (5%) reported any public involvement. Six trials reported public involvement in setting the research aim and seven in developing study methods. The authors of one study reflected on the overall role and influence of public involvement in the research. Rate of public involvement in Australian clinical trials is seemingly substantially lower than those reported in countries with similar advanced public health care systems, notably the United Kingdom. Our observations may be explained by a lack of researcher skills in how to involve the public and the failure by major funding agencies in Australia to mandate public involvement when deciding on how to award grant funding.

Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers

BackgroundPatient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature.MethodsThe study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants (n = 30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5–3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop.ResultsOur participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all.ConclusionsFuture directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.

“They should’ve talked to us more”: lay health advisors’ experiences with community-engaged hypertension research

BackgroundLay health advisors (LHAs) are increasingly being used to increase patient and public involvement in research, disseminate health information, and work toward preventing health disparities within communities at risk. This research explored LHAs’ experiences with training and recruiting for a hypertension research project which ended due to minimal enrollment.MethodsThe methodological design was qualitative description. One face-to-face semi-structured focus group was held with eight African American LHAs in Cleveland, Ohio, in the fall of 2019. The focus group was digitally recorded and transcribed by a professional transcriptionist and thematically analyzed.ResultsTrainees reflected on how much they learned from the training and described feeling passionate and excited about their community work for the project. We identified three key themes from the data: (1) Systemic and Institutional Factors Affected LHAs’ Experiences (subthemes: Unnecessarily Burdensome Requirements and Exploitation of Community Members for Research Gain; (2) Feeling Used Yet Unseen: Exclusion from Decision-Making Processes; (3) Worrying that Project Termination Damaged their Reputation; and (4) Disengaging from Research. We share lessons learned, including the need for LHAs’ expertise to be integrated into research studies, and for projects to establish clear communication and expectations regarding research rigor and requirements.ConclusionOur results have implications for future studies attempting to build equitable and strong academic-community relationships to yield rigorous and useful research to reduce health disparities.

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

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

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

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

Patient and Public Involvement in Inflammatory Bowel Disease Research-A Scoping Review.

Interest in patient and public involvement in research has grown. Medical, health, and social care research has demonstrated several benefits of patient and public engagement, such as empowering user input and reducing attrition rates in clinical trials. To date, no study has reviewed patient engagement in inflammatory bowel disease (IBD). We aimed to describe the benefits, challenges, and best practices of patient engagement in IBD research. We performed a systematic search on MEDLINE, EMBASE, and Cochrane for all clinical IBD research studies in which patients were involved in the research process (1946- 2023). Patient input was considered in: (1) study design, (2) study execution, (3) research dissemination, and/or (4) other domains not specified here. Two authors independently screened and extracted data on type of engaged person(s), format of engagement, author-reported benefits, recommendations, and challenges. For each study, we reported the level of patient engagement and study adherence to standardized reporting guidelines. After screening 9,355 articles, we included 51 for final analysis. IBD patients were most frequently engaged in study design. Patient engagement in IBD research improved recruitment rates and promoted the creation of user-friendly quality-of-life tools. Selection bias and recruitment difficulties were common challenges in the application of patient engagement. Authors recommended continuous patient involvement to address emerging priorities and cognitive interviewing to improve questionnaire clarity. Patient engagement represents an important step in promoting patient-centred care. According to study authors, implementing cognitive interviewing techniques, continuous patient involvement, and standardized reporting guidelines may improve future iterations of engagement in IBD.

Exploring the knowledge contributions of carers involved in a group process aimed at co-creating a targeted support intervention

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance

IntroductionPatient and public involvement (PPI) is increasingly seen as something that is integral to research and of importance to research funders. There is general recognition that PPI is the right thing to do for both moral and practical reasons. The aim of this review of reviews is to examine how PPI can be done ‘properly’ by looking at the evidence that exists from published reviews and assessing it against the UK Standards for Public Involvement in Research, as well as examining the specific features of population health research that can make PPI more challenging.MethodsA review of reviews and development of best practice guidance was carried out following the 5-stage Framework Synthesis method.ResultsIn total 31 reviews were included. There is a lack of current research or clarity around Governance and Impact when findings are mapped against UK Standards for Public Involvement in Research. It was also clear that there is little knowledge around PPI with under-represented groups. There are gaps in knowledge about how to ensure key specific attributes of population health research are addressed for PPI team members – particularly around how to deal with complexity and the data-driven nature of the research. Four tools were produced for researchers and PPI members to further improve their PPI activity within population health research and health research more generally, including a framework of recommended actions to address PPI in population health research, and guidance on integrating PPI based on the UK Standards for Public Involvement in Research.ConclusionsFacilitating PPI in population health research is challenging due to the nature of this type of research and there is far less evidence on how to do PPI well in this context. The tools can help researchers identify key aspects of PPI that can be integrated when designing PPI within projects. Findings also highlight specific areas where more research or discussion is needed.

Evidencing the Impact of Web-Based Coproduction With Youth on Mental Health Research: Qualitative Findings From the MindKind Study.

Public involvement in research is a growing phenomenon as well as a condition of research funding, and it is often referred to as coproduction. Coproduction involves stakeholder contributions at every stage of research, but different processes exist. However, the impact of coproduction on research is not well understood. Web-based young people's advisory groups (YPAGs) were established as part of the MindKind study at 3 sites (India, South Africa, and the United Kingdom) to coproduce the wider research study. Each group site, led by a professional youth advisor, conducted all youth coproduction activities collaboratively with other research staff. This study aimed to evaluate the impact of youth coproduction in the MindKind study. To measure the impact of web-based youth coproduction on all stakeholders, the following methods were used: analysis of project documents, capturing the views of stakeholders using the Most Significant Change technique, and impact frameworks to assess the impact of youth coproduction on specific stakeholder outcomes. Data were analyzed in collaboration with researchers, advisors, and YPAG members to explore the impact of youth coproduction on research. The impact was recorded on 5 levels. First, at the paradigmatic level, a novel method of conducting research allowed for a widely diverse group of YPAG representations, influencing study priorities, conceptualization, and design. Second, at the infrastructural level, the YPAG and youth advisors meaningfully contributed to the dissemination of materials; infrastructural constraints of undertaking coproduction were also identified. Third, at the organizational level, coproduction necessitated implementing new communication practices, such as a web-based shared platform. This meant that materials were easily accessible to the whole team and communication streams remained consistent. Fourth, at the group level, authentic relationships developed between the YPAG members, advisors, and the rest of the team, facilitated by regular web-based contact. Finally, at the individual level, participants reported enhanced insights into mental well-being and appreciation for the opportunity to engage in research. This study revealed several factors that shape the creation of web-based coproduction, with clear positive outcomes for advisors, YPAG members, researchers, and other project staff. However, several challenges of coproduced research were also encountered in multiple contexts and amid pressing timelines. For systematic reporting of the impact of youth coproduction, we propose that monitoring, evaluation, and learning systems be designed and implemented early.

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

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

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.

Research and Innovation in Organ Donation: Recommendations From an International Consensus Forum.

We identified topics impacting donation research through consensus using nominal group technique. Members performed narrative reviews and synthesized current knowledge on each topic, which included academic articles, policy documents, and gray literature. Using the nominal group technique, committee members discussed significant findings, which provided evidence for our recommendations. The Forum's scientific committee then vetted recommendations. We developed 16 recommendations in 3 key areas to provide stakeholders guidance in developing a robust deceased donor research framework. These include PFD and public involvement in research; donor, surrogate, and recipient consent within a research ethics framework; and data management. We highlight the importance of PFD and public partner involvement in research, we define the minimum ethical requirements for the protection of donors and recipients of both target and nontarget organ recipients, and we recommend the creation of a centrally administered donor research oversight committee, a single specialist institutional review board, and a research oversight body to facilitate coordination and ethical oversight of organ donor intervention research. Our recommendations provide a roadmap for developing and implementing an ethical deceased donation research framework that continually builds public trust. Although these recommendations can be applied to jurisdictions developing or reforming their organ and tissue donation and transplantation system, stakeholders are encouraged to collaborate and respond to their specific jurisdictional needs related to organ and tissue shortages.

Patient and public involvement in research published in the British Journal of Occupational Therapy 2015–2021: A scoping review

Introduction: The British Journal of Occupational Therapy ( BJOT) recently introduced a requirement for authors to report Patient and Public Involvement (PPI). The public and people using health and social care services have knowledge which holds value in research beyond use as data. Involvement in research process can help shape the generation of critical evidence informing policies and practices; however, little is known about prior PPI reporting. Method: A scoping review was conducted identifying public involvement in research published in BJOT between 2015 and 2021. An electronic search was conducted using key terms. Data were extracted in duplicate or triplicate using GRIPP2 short form checklist. Results: Twenty-five studies were identified which reported public involvement, this was 6% of research published in BJOT. Patients and public were mainly involved in study steering or advisory groups and their primary activity was developing or piloting study materials. There were low levels of reporting the aim, outcome and critical reflections on involvement activities. Main approaches to involvement were consultation (37%) and collaboration (30%). There was inconsistent use of language and terms. Recommendations: Consistent PPI reporting using Guidance for Reporting Involvement of Patients and the Public (GRIPP 2), critical reflection of impact of PPI, acknowledgement of public contributors, future scoping review investigating impact of BJOT PPI authorship guidelines.

Principles of patient partnership: integrating patient perspectives into ERS Clinical Research Collaborations.

Patient and public involvement in research is increasingly considered a cornerstone of good research practice, and the research community recognises people with lived experience as valuable stakeholders within the research process. European Respiratory Society (ERS) strongly encourages patient input into its research programme and scientific activities, working in partnership with the European Lung Foundation (ELF) to facilitate this. Based on the ERS and ELF experience and best practice in the field of patient and public involvement, we developed a set of principles to which future ERS and ELF collaborations should adhere. These principles provide guidance on how to address key challenges when planning and conducting patient and public involvement in order to develop successful partnerships with patients and drive forward patient-centred research.