Co-Design Workshops to Develop a Psychosocial Support Service Model for Refugees in Sweden Affected by Gender-Based Violence.

BACKGROUND: Experiencing gender-based violence (GBV) is common among refugees. Intersecting systems of oppression can increase the risk of GBV and of suffering detrimental consequences, while concurrently creating barriers to meaningful support. Despite this, refugees with lived experience of GBV are rarely involved in the development, planning and adaptation of services and policies. METHODS: This article reports on a formative research process that aimed to involve public contributors (refugee victim-survivors of GBV) and relevant stakeholders in co-designing a service model aimed at improving psychosocial support in Sweden. Led by a partnership of public contributors and academic researchers, the research process consisted of iterative cycles of co-design workshops, complemented by scoping of existing literature. RESULTS: The co-design process resulted in a characterisation of the psychosocial service system needs, as perceived by the survivor co-researchers and stakeholders, and a two-level empowerment and support service model. The model included (i) a community-based intervention to promote help-seeking and (ii) psychosocial group support delivered in specialist clinics. Outcomes of the project included perceived benefits for those involved, service-led direct changes and acquisition of funding for continued research on the co-designed model. CONCLUSION: Improving psychosocial support for refugees in Sweden affected by GBV requires safe spaces to connect with peers and familiarise with available services, laws and rights in the society. Further, strengthened collaborations across sectors are necessary to meet the variety of needs. Co-design workshops were an effective way to initiate changes in the service delivery model for psychosocial support for refugees in Sweden affected by GBV. PATIENT OR PUBLIC CONTRIBUTIONS: This is a participatory reflection on a participatory process. The survivor co-researchers contributed to designing and carrying out the PPI process and have co-authored this manuscript.

Evaluating parent and public involvement activities within a paediatric palliative care research centre: Route map to impactful and meaningful engagement.

BACKGROUND: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important. AIM: To evaluate a paediatric palliative care research centre's PPI activity to determine what went well, or less well; and how future activities can be improved. DESIGN: Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically. SETTINGS/PARTICIPANTS: Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre. FINDINGS: The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre's approach to PPI and the opportunities to improve. CONCLUSIONS: To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a 'route map' for establishing an impactful PPI group for paediatric palliative care research.

Public Involvement and Engagement in Big Data Research: Scoping Review.

BACKGROUND: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research. OBJECTIVE: This review aims to synthesize the evidence on public involvement and engagement in big data research. METHODS: This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review. RESULTS: A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research. CONCLUSIONS: This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-https://doi.org/10.1136/bmjopen-2021-050167.

Public involvement in an aggregate and individual participant data meta-analysis of mindfulness-based programmes for mental health promotion.

BACKGROUND: Involving the public in evidence synthesis research is challenging due to the highly analytic nature of the projects, so it is important that involvement processes are documented, reflected upon, and shared to devise best practices. There is a literature gap on the involvement of the public in individual participant data meta-analyses, particularly in public health projects. We aimed to document and reflect on our collective experiences of involving and being involved as public stakeholders at all stages of a systematic review and individual participant data meta-analysis project. METHODS: We formed a stakeholder group made of four members of the public at the beginning of our evidence synthesis project comprising a systematic review, an aggregate data meta-analysis, and an individual participant data meta-analysis of mindfulness-based programmes for mental health promotion in non-clinical adults. Following each group meeting, members and participating researchers completed written reflections; one group member collected and collated these. At the end of the project, a reflective writing workshop was held before all members completed their final reflections. Everyone completed an adapted, open-ended questionnaire which asked about what did and did not work well, the overall experience, what could be improved, and the felt impact the stakeholder group had on the research. RESULTS: Overall, the stakeholders and researchers reported a positive experience of working together. Positives from the stakeholders' point of view included learning new skills, experiencing research, and making new friends. For the researchers, stakeholders helped them focus on what matters to the public and were reinvigorating research partners. The challenges stakeholders experienced included having long gaps between meetings and feeling overwhelmed. The researchers found it challenging to strike the balance between asking stakeholders to be involved and for them to learn research-related skills without overburdening them and making sure that the learning was engaging. When looking back at their experience, stakeholders described seeing their impact on the project in hindsight but that this was not felt while the project was being carried out. CONCLUSION: Successfully involving the public in complex evidence synthesis projects is possible and valuable from the points of view of the researchers and the stakeholders. However, it requires a significant time, skill, and resource investment that needs to be factored in from project inception. Further guidance and stakeholder training materials would be helpful. Specific suggestions are provided.

How to talk to young people about their mental health: a co-produced psychoeducation video.

BACKGROUND: When creating resources, such as psychoeducational materials, for children and families, it is essential to consult all stakeholders. By asking service users what they would find helpful, we can ensure that psychoeducational materials developed are directly addressing a need. This report summarises the process of co-developing a psychoeducational video with young people for the adults in their lives. METHODS AND RESULTS: The idea for a psychoeducational video originated from discussions within a Youth Advisory Group in a South London Child and Adolescent Mental Health Service. The group shared that they wanted a way of letting the adults in their lives know what is and is not helpful to hear when they are experiencing mental health distress. A workshop was held with young people to gather ideas for the content and style of a psychoeducational video resource. Through co-design methods, themes were identified including prioritising the young person's lived experience, the importance of listening, respecting and validating, adults not making assumptions about a diagnosis, and actively involving young people in care planning. A script and accompanying video were produced over several co-design sessions and shared via multiple online mass communication channels. CONCLUSIONS: This project was co-produced at all stages by young people with lived experience of mental health difficulties to develop a digital resource that they considered necessary and meaningful. Centring the voices of young people when producing materials concerning their mental health results in valuable resources and can bring autonomy to those involved.

Perspectives of researchers and clinicians on patient and public involvement (PPI) in preclinical spinal cord research: An interview study.

INTRODUCTION: Patient 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. METHODS: Semi-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. FINDINGS: Nine 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. CONCLUSIONS: While 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 CONTRIBUTION: This 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.

Patient and public involvement in preclinical and medical research: Evaluation of an established programme in a Discovery-Based Medical Research Institute.

BACKGROUND AND CONTEXT: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery-based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. OBJECTIVE: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery-Based Medical Research Institute (DBMRI) to inform programme development and the wider field. DESIGN AND PARTICIPANTS: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co-developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. RESULTS: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer-researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. CONCLUSION: Discovery-based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery-based research process through a coordinated, organisation-wide approach with the potential for application in similar preclinical research settings. PATIENT OR PUBLIC CONTRIBUTION: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co-developed and pilot-tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co-authors by editing the manuscript.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Participatory research with carers: A systematic review and narrative synthesis.

INTRODUCTION: As patient and public involvement (PPI) in research has become increasingly common, research-based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed. OBJECTIVE: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. METHODS: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted. FINDINGS: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances. CONCLUSION: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. PATIENT AND PUBLIC INVOLVEMENT: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.

Co-producing research study recruitment strategies with and for children and young people for paediatric chronic pain studies.

Introduction: Children and young people experiencing chronic pain are at greater risk of inequitable and poor-quality pain management, which has implications for future management of pain in adulthood. Most chronic pain research is conducted with adults who are more likely to be middle-class, white and monocultured. Inclusive and diverse recruitment practices in paediatric pain research can be an area in which we can address this imbalance of representation. The aim of this current work was to explore these practices and to co-produce recommendations regarding recruitment strategies for paediatric pain research. Methods: The research team worked with Your Rheum, a United Kingdom young person's advisory group (ages 11-24 years) and diagnosed with rheumatic condition(s), the opportunity to input into rheumatology research. At a virtual Your Rheum meeting, eight young people (female = 7, male = 1, age range 12-24) took part in group discussions, sharing their experiences of taking part in research and their decision process. Online tools, including Mentimeter and Miro, were used to aid conversations and share ideas. Results: Most young people had experience of taking part in research as a study participant (n = 5). Recommendations synthesised included increased awareness of research in general. The young people discussed being open to hearing about research opportunities; they reflected that they are rarely exposed to these invitations or hear about current research. The clinic environment was highlighted as a "good and trustworthy" recruitment area - being approached by a member of the research team was considered ideal, even if it was someone they had not met previously. Many young people recalled little discussions of research at their clinical appointments. Deciding to participate in research included the following considerations: benefit/impact; connecting with others; research topic; which is then balanced against convenience, and reimbursement. The young people felt that taking part in research was empowering and helped them take ownership of their pain management. Conclusion: It is essential to understand the perspectives of potential study participants, to plan successful recruitment strategies. Ensuring we consider these factors when designing our studies and recruitment strategies is beneficial to all involved. Co-produced recruitment strategies would aid inclusive (and increased) research participation.

Using Palliative Care Needs Rounds in the UK for care home staff and residents: an implementation science study.

Background: Care home residents often lack access to end-of-life care from specialist palliative care providers. Palliative Care Needs Rounds, developed and tested in Australia, is a novel approach to addressing this. Objective: To co-design and implement a scalable UK model of Needs Rounds. Design: A pragmatic implementation study using the integrated Promoting Action on Research Implementation in Health Services framework. Setting: Implementation was conducted in six case study sites (England, n = 4, and Scotland, n = 2) encompassing specialist palliative care service working with three to six care homes each. Participants: Phase 1: interviews (n = 28 care home staff, specialist palliative care staff, relatives, primary care, acute care and allied health practitioners) and four workshops (n = 43 care home staff, clinicians and managers from specialist palliative care teams and patient and public involvement and engagement representatives). Phase 2: interviews (n = 58 care home and specialist palliative care staff); family questionnaire (n = 13 relatives); staff questionnaire (n = 171 care home staff); quality of death/dying questionnaire (n = 81); patient and public involvement and engagement evaluation interviews (n = 11); fidelity assessment (n = 14 Needs Rounds recordings). Interventions: (1) Monthly hour-long discussions of residents' physical, psychosocial and spiritual needs, alongside case-based learning, (2) clinical work and (3) relative/multidisciplinary team meetings. Main outcome measures: A programme theory describing what works for whom under what circumstances with UK Needs Rounds. Secondary outcomes focus on health service use and cost effectiveness, quality of death and dying, care home staff confidence and capability, and the use of patient and public involvement and engagement. Data sources: Semistructured interviews and workshops with key stakeholders from the six sites; capability of adopting a palliative approach, quality of death and dying index, and Canadian Health Care Evaluation Project Lite questionnaires; recordings of Needs Rounds; care home data on resident demographics/health service use; assessments and interventions triggered by Needs Rounds; semistructured interviews with academic and patient and public involvement and engagement members. Results: The programme theory: while care home staff experience workforce challenges such as high turnover, variable skills and confidence, Needs Rounds can provide care home and specialist palliative care staff the opportunity to collaborate during a protected time, to plan for residents' last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while harnessing services' complementary expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication. This can improve resident care, enabling residents to be cared for and die in their preferred place, and may benefit relatives by increasing their confidence in care quality. Limitations: COVID-19 restricted intervention and data collection. Due to an insufficient sample size, it was not possible to conduct a cost-benefit analysis of Needs Rounds or calculate the treatment effect or family perceptions of care. Conclusions: Our work suggests that Needs Rounds can improve the quality of life and death for care home residents, by enhancing staff skills and confidence, including symptom management, communications with general practitioners and relatives, and strengthen relationships between care home and specialist palliative care staff. Future work: Conduct analysis of costs-benefits and treatment effects. Engagement with commissioners and policy-makers could examine integration of Needs Rounds into care homes and primary care across the UK to ensure equitable access to specialist care. Study registration: This study is registered as ISRCTN15863801. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128799) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 19. See the NIHR Funding and Awards website for further award information.

Care home residents often lack access to end-of-life care from hospice teams and so may experience distressing symptoms at end of life if care home staff cannot fully meet their needs. We examined how an approach which worked well in Australia called 'Palliative Care Needs Rounds' (or 'Needs Rounds') could be used in the United Kingdom. We interviewed 28 people (care home staff, hospice staff and other National Health Service/social care professionals in the community) about their understanding of the United Kingdom setting, what might help trigger change and what results they would want. We discussed these interviews at online workshops with 43 people, where we started to develop a theory of 'what would work, for whom, under what circumstances' and determine what United Kingdom Needs Rounds would look like. Six specialist palliative care services, each partnered with three to six local care homes, used Needs Rounds for a year. We collected information on care home residents, staff experiences of using Needs Rounds, relatives' perceptions of care quality, staff views of residents' quality of death, and on their ability to provide a palliative approach to residents. We found that Needs Rounds can provide care home staff and specialist palliative care staff the opportunity to work together during a protected time, to plan for residents' last months of life. Needs Rounds build care home staff confidence and can strengthen relationships and trust, while using each services' expertise. Needs Rounds strengthen understandings of dying, symptom management, advance/anticipatory care planning and communication between care home staff, families, specialist palliative care staff and primary care. This improves the quality of resident care, enabling residents to be cared for and die in their preferred place, and also benefits relatives by increasing their confidence in care quality.

An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken.

BACKGROUND: In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved. METHODS: We used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics. RESULTS: Whilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health. CONCLUSION: Our findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.

When confronted with a rare disease it is often hard to access information and or medical experts for help. Parents of children affected by idiopathic ketotic hypoglycemia (IKH) have joined in a patient-led organisation to initiate and lead research that could give answers to their medical questions and worries. Medical experts have been invited to join the organisation as members of the Scientific Advisory Board (SAB). When people report on health research conducted in collaboration with patients and or members of the public, they mostly mention positive outcomes. At KHI, some people had left the organisation and we had to deal with some difficult situations; so, we wanted to document and understand these challenges. Nine members of KHI, parents and medical experts, wrote down their stories, using three topics to guide their narrative: time invested, work invested and power dynamics at KHI. Parents and medical experts felt a new hope for (their) children with IKH when working for KHI but they also felt pressured to work at all hours and at the cost of time with their families or their own health. The stories revealed that parents felt less important compared to medical experts, but also that the relationship between parents and experts changed from the parent being taught by the expert, to the expert starting to learn from the lived experience of the parent. To make these collaborations successful we plead for funding for patient-led organisation and ethical guidelines to safeguard volunteers (both medical and lay people).

Improving healthcare transition for young people with cancer: factors fundamental to the quality improvement journey.

BACKGROUND: Young people receiving cancer treatment in the South Thames Children's, Teenagers' and Young Adults' Cancer Operational Delivery Network usually receive care across two or more NHS trusts, meaning transition into adult services can be challenging. AIM: To develop a planned, co-ordinated approach to transition across the network that meets National Institute for Health and Care Excellence guidance recommendations for transition and the cancer service specifications. METHODS: A 2-year, nurse-led quality improvement (QI) project, using the principles of experience-based co-design. OUTCOMES: The QI project resulted in the development of six key principles of practice; refining and testing of a benchmarking tool; initiatives to facilitate first transition conversations; and the launch of an information hub. CONCLUSION: Robust QI processes, cross-network collaboration and wide stakeholder involvement required significant resource, but enabled deeper understanding of existing pathways and processes, facilitated the establishment of meaningful objectives, and enabled the testing of interventions to ensure the project outcomes met the needs of all stakeholders.

The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study.

INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.

Development and Evaluation of a Framework for Authentic Online Co-Design: Partnership-Focussed Principles-Driven Online Co-Design.

INTRODUCTION: Co-design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co-design is undertaken in-person; however, exploring online delivery is warranted. PPIE in co-design must be considered carefully, and assumptions that in-person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence-informed approaches to facilitating co-design online. This study aimed to develop and evaluate a framework for authentically adapting health research co-design into an online environment. MATERIALS AND METHODS: The initial framework was developed through a literature review, synthesis of in-person co-design principles, and alignment of online strategies. The framework was then applied to a co-design project with 10 participants across relevant PPIE groups (end-users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician-researchers [n = 2]). Participants' experiences of the online co-design process were evaluated via a mixed-methods design using surveys and semi-structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. RESULTS: The developed framework, Partnership-focussed Principles-driven Online co-Design (P-POD) was used to design eight 90 min online co-design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P-POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P-POD framework is presented. CONCLUSION: With evaluation of the initial P-POD framework showing evidence of adherence to co-design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P-POD framework may be used and evaluated within future intervention or service design. PATIENT OR PUBLIC CONTRIBUTION: This study involved the participants (end-users, clinicians and service providers) in the co-design process described, interpretation of the results through member-checking interview responses, assisting in development of the final framework and as co-authors for this manuscript.

Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique.

BACKGROUND: Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service. METHODS: A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors. RESULTS: Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training. CONCLUSION: Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.

Consumer involvement in health research is when patients, their families, and caregivers work with researchers on research projects. While there is a growing expectation for health services to promote the involvement of consumers in health service research, it is still a work in progress, especially in Australia, where there hasn't been much research done on this topic. This study looked at what consumers and staff at an Australian hospital thought would hinder or help consumers to become involved in health research. The study used a method called the Nominal Group Technique (NGT), where groups of staff and consumers met for sessions ranging from one to three hours to share and prioritise their ideas. Consumers thought that barriers to their involvement included difficulty connecting with researchers or projects, not knowing much about research, and personal barriers to involvement (such as lack of childcare). They believed that better connection with researchers, information, incentives for involvement, and ensuring everyone's voices are heard were possible solutions. Staff also had ideas for solutions, like providing support to connect with consumers and more time for research activities. Overall, this study describes what consumers and staff think about working together on research. These findings can help develop strategies for building relationships between consumers and researchers, advancing collaborative efforts in health research.

Co-creating and hosting PxP: a conference about patient engagement in research for and by patient partners.

Research projects, initiatives and conferences that include patients as partners rather than as participants are becoming more common. Including patients as partners (what we will call 'patient partners') is an approach called patient engagement or involvement in research, and we will call it patient engagement throughout this paper. Patient engagement moves traditional health research conferences and events to include a broader audience for their knowledge exchange and community building efforts, beyond academics and healthcare professionals. However, there are few examples of conferences where patients are given the opportunity to fully lead. Our conference went beyond patient engagement - it was patient-led. Patient partners conceived, planned, and decided on all aspects of a virtual conference.We present the work and processes we undertook throughout 2023 to create and produce a free conference called "PxP: For patients, by patients" or PxP for short, with a tagline of "Partnering to make research stronger." PxP was patient-led and about patient engagement in research rather than a specific disease or condition. PxP was supported by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis. The PxP website, known as the PxP Hub, now houses the conference recordings along with resources about patient engagement in research. These resources were recommended by the PxP Steering Committee members, speakers, and others who attended the 2023 conference. Here we lead you through how the idea for PxP was generated; how the international patient partner Steering Committee was convened and supported; how PxP was brought to life over nine months; the PxP 3-day event and feedback collected to improve future efforts; trade-offs, challenges and learnings; and resources required to support this type of event. We close with what the future holds for PxP in 2024 and beyond.It's time to elevate patients into leadership roles for conferences and events, and we encourage you to adopt the PxP ethos by using or adapting our approach and resources to support your opportunity.

Intergenerational engagement with Asian residents in long-term care facilities: a mixed method systematic review.

Introduction: Asian countries are experiencing a rapid rise in their aging populations. Cognitive and physical decline associated with aging can limit social interaction. This particularly impacts on those residing in long-term care facilities and engagement with children and young people. Intergenerational engagement has known benefits on the health and wellbeing of older people, it is unclear what the impact of intergeneration engagement interventions might have on older people in Asian long-term care settings. This review aims to evaluate the effectiveness and experiences of intergenerational engagement with older people in long-term care facilities in Asia. Methods: Ten databases were searched to locate empirical studies of any design published in English or Chinese from January 2000 to June 2023. The search was limited to papers reporting effectiveness and/or experiences of intergenerational engagement on older people residing in Asian long-term care settings. The protocol was registered with PROSPERO (CRD42023413935) and followed PRISMA guidelines for reporting. A convergent design employing narrative synthesis was used to synthesize and integrate findings. Results: From initial searches, 1,092 records were identified, of which 13 studies were retained for the review: 7 quantitative (including 1 randomized controlled trial, 1 cross-sectional observational design, and 5 quasi-experimental designs), 3 qualitative, and 3 mixed methods. Included studies were of variable quality. Quantitative evidence revealed that intergenerational engagement reduced depression (4.47 vs. 8.67, p = 0.005), negative emotions (14.11 vs. 16.56, p = 0.030), and feelings of loneliness (p < 0.01) among older people; and increased quality of life (mean change = -1.91; 95% CI = -3.18, -0.64) and strengthens interpersonal interactions (p = 0.025). Qualitative insights suggested that intergenerational engagement could foster emotional bonds, enhance intergenerational relationships, promote lifelong learning, satisfy social needs and improve older peoples' overall quality of life. However, some challenges such as language differences and noise levels can hinder successful implementation of intergenerational engagement. Conclusion: This review indicates that intergenerational engagement can reduce depression and loneliness, improve quality of life, and strengthen social bonds for older individuals in Asian long-term care facilities. Despite some challenges, the evidence underlines its potential to meet the emotional and social needs of older people. Recognizing and addressing delivery challenges is essential for effective implementation. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42023413935, identifier: CRD42023413935.

A critical reflection on using the Patient Engagement In Research Scale (PEIRS) to evaluate patient and family partners' engagement in dementia research.

Introduction: Research involvement of people with lived experiences is increasing. Few tools are designed to evaluate their engagement in research. The Patient Engagement In Research Scale (PEIRS) is one of the few validated tools. Our team employed the PEIRS with patient and family partners with lived experiences of dementia every 6 months in a two-year telepresence robot project. This reflection paper reports our self-study on key learnings and proposes practical tips on using the PEIRS to evaluate patient and family partners' engagement in dementia research. It is the first to document a case using the PEIRS multiple times in a dementia research project. Methods: Guided by Rolfe et al.'s reflective model, we conducted three team reflective sessions to examine the team's experiences using the PEIRS to improve and evaluate patient and family partners' engagement in the research. We also reviewed our meeting notes and fieldnotes documented in the research journal. A reflexive thematic analysis was performed. Results: The team identified three key learnings: the values of using the PEIRS survey, the adaptations, and the factors influencing its implementation as an evaluation tool. Using the PEIRS provided significant benefits to the project, although some patient and family partners felt it was burdensome. The evaluation tool was enhanced with emojis and comment boxes based on suggestions from patient partners. The emojis introduced an element of fun, while the comment boxes allowed for personalized responses. Several factors influenced the PEIRS tool's effectiveness: the interviewer's identity, the confidentiality of responses and follow-ups, the timing and frequency of using the tool, and the presentation of the evaluations. These learnings led to the development of six practical tips,-"ENGAGE": Enjoyable and fun process, Never impose, Get prepared early, Adapt to the team's needs, Give people options, and Engage and reflect. Conclusion: With the emerging trend of including people with lived experiences in dementia research, there is a need for ongoing assessment of engagement from both patient and family partners and the research team strategies. Future research can further explore survey logistics, co-development of evaluation tools, and the use of tools with people living with dementia.