A bridge between worlds: Embedding research in telepractice co-design with disability community.

People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstractWhy was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults.

BackgroundThere is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research in that area. This is especially true in eating disorder research, where the inclusion of co-production approaches lags other research areas. Appealing to principles or values can serve to ground collaborative working. Despite this, there has not been any prior attempt to co-produce principles to guide the work of a research group and serve as a basis for developing future projects.MethodsThe aim of this piece of work was to co-produce a set of principles to guide the conduct of research within our lived experience led research clinic, and to offer an illustrative case for the value of this as a novel co-production methodology. A lived experience panel were recruited to our eating disorder research group. Through an iterative series of workshops with the members of our research clinic (composed of a lived experience panel, clinicians, and researchers) we developed a set of principles which we agreed were important in ensuring both the direction of our research, and the way in which we wanted to work together.ResultsSix key principles were developed using this process. They were that research should aim to be: 1) real world—offering a clear and concrete benefit to people with eating disorders, 2) tailored—suitable for marginalised groups and people with atypical diagnoses, 3) hopeful—ensuring that hope for recovery was centred in treatment, 4) experiential—privileging the ‘voice’ of people with eating disorders, 5) broad—encompassing non-standard therapeutic treatments and 6) democratic—co-produced by people with lived experience of eating disorders.ConclusionsWe reflect on some of the positives as well as limitations of the process, highlighting the importance of adequate funding for longer-term co-production approaches to be taken, and issues around ensuring representation of minority groups. We hope that other health research groups will see the value in co-producing principles to guide research in their own fields, and will adapt, develop, and refine this novel methodology.

Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and clinical genetics communities. Varying opinions exist amongst the disability community: some value genetic services while others are opposed. However, there is limited research exploring the opinions of individuals with a disability regarding issues related to reproduction and genetic services in the context of personal experience. This exploratory qualitative study involved interviews with seven women and three men who self-identify as having a disability. We sought to gain their perspectives on experiences with disability, thoughts about reproduction and parenting, and perceptions of genetic services. Transcripts of the interviews were analyzed thematically using qualitative content analysis. Data analysis showed that societal views of disability affected the lived experience and impacted reproductive decision-making for those with a disability. It also showed differing interest in genetic services. Concerns about the perceived collective implications of genetic services were also raised. These findings contribute to the understanding of the disability perspective toward reproductive decision-making and genetic services. A further goal is to promote a meaningful dialogue between the genetics and disability communities, with the potential to enhance the genetic and reproductive care provided to individuals with disabilities.

Patient and public involvement and engagement (PPIE) is integral to health research. Reporting of PPIE methods and impact is becoming increasingly common in health research. However, reporting on PPIE in studies using large, routinely collected electronic health record data sets is less common. Anecdotal evidence suggests that involvement in this research context is more challenging and offers fewer opportunities for meaningful influence on the research process. This paper reports the involvement approach for a Clinical Practice Research Datalink (CPRD) study and critically reflects on the process and impact of involving young people, parents and carers in research using this UK primary care electronic health record data set. The CHOOSE study investigated mental health diagnoses of children and young people (1-24 years) during the COVID-19 pandemic using the CPRD. The study was informed by a Lived Experience Advisory Panel (LEAP) which consisted of 13 members including 8 young people (13-25 years) with lived experience of mental health difficulties and 5 parents/carers, with involvement activities facilitated by project partners, mental health research charity, The McPinR Foundation. We reflect on this process in this manuscript. Key benefits of involving people with lived experience in this research included making sense of and contextualising findings and ensuring that they were focused on making a difference to young people's lives. Challenges included the fixed nature of the CPRD data, which did not capture all the information people with lived experience perceived to be important. Researchers expressed limited time for PPIE activities although that was compensated by McPin colleagues who organised and facilitated online meetings, and supported the young people, parents and carers during and between meetings. This paper describes an approach to patient and public involvement in an electronic health record database study. Working collaboratively with young people, carers and other stakeholders requires sufficient time and adequate resources. We also highlight the importance of appropriate training and support and being transparent about the limitations of PPIE involvement. Three members of the CHOOSE LEAP have been involved in conceptualising and writing this paper.

Background: One of the most devastating consequences of aphasia is the disruption to normal conversation. The Conversation Partner Programme emphasises communicative competence and life participation. Currently there is no recognised system for evaluating this intervention. Following policy imperatives for patient and public involvement, it is important to include service users in the development of evaluation criteria. However, people with aphasia are often excluded from such research and service development initiatives because of their communication disability. This study was designed to include people with aphasia and other key stakeholders as co-researchers in the development of evaluation criteria for a Conversation Partner Programme.Aims: To describe the multi-perspectival co-generation of Conversation Partner Programme evaluation criteria using a participatory research approach.Methods & Procedures: Following a pilot study, the generation and analysis of qualitative data involved a Participatory Learning and Action (PLA) approach based on the interpretive paradigm. Using purposeful sampling participants (n = 20) included: people with aphasia (n = 5); speech and language therapists (n = 5); speech and language therapy graduates and undergraduates (n = 9) and university coordinator (n = 1). Through (n = 18) individual and inter-stakeholder data generation episodes (PLA focus groups and interviews) using participatory techniques (Flexible Brainstorming, Card Sort, Direct Ranking, Seasonal Calendar), evaluation criteria were identified. The principles of thematic analysis guided the co-analysis of data with participants. Data generated in Ireland were presented to an international inter-stakeholder group at Connect, UK, for preliminary exploration of transferability of findings.Outcomes & Results: Conversation Partner Programme evaluation criteria agreed and prioritised by co-researchers in order of importance included: (1) shared understanding of structure, (2) clarity about the programme, (3) agreed evaluation mechanism, (4) linking with other organisations, and (5) feedback. “Shared Understanding of Structure” was ranked the most important criterion and related to the nature and number of participants, opportunities for group meetings, socialising, and stakeholder interaction. “Feedback”, the criterion ranked least important, detailed responsibilities about summarising programme experiences and sharing this information between stakeholders.Conclusions: People with aphasia and other key stakeholders were meaningfully involved in the identification of evaluation criteria for a Conversation Partner Programme. The outcomes of this collaborative work bridge the gap between policy imperatives around involvement and actual practice and will impact the design, delivery, and evaluation of the programme for all stakeholders. Findings will be of interest to professionals in this clinical area and to those exploring innovative methodologies to include marginalised service users, especially people with communication disabilities in research.

The last decades have seen a rapid change in attitudes towards the environment, reflecting a greater environmental awareness of environment among professionals as well as the general public. Public participation has become increasingly more important, playing a relevant role in determining the way society will manage, protect, and reclaim the environment. This trend is “now” recognized by landscape architects, landscape ecologists, and sociologists, among others. A wide range of methods have been established all over the world, including new ways of people interacting, new types of events, new services, and new support frameworks. This chapter addresses the benefits of using public participation in landscape redevelopment and the ways in which the introduction of public opinion can improve the design process. Although public participation has gained wide acceptance among private and public domains, academic literature and research offer still limited understanding on how to accomplish it and what contributes to its success. The relevance of public participation is discussed through exploring the definitions of public participation, why the public should be involved, and the role of participation in project acceptability. Using 3 projects, considered best practice examples, this chapter discusses the use of public participation in the redevelopment projects. The addressed case studies enabled us to explore contributions to achieve sustainable development and the reasons why public participation should be an integral part of landscape redevelopment projects. We conclude that public participation may encourage awareness of “belonging to” a community, sharing common culture and creating identity. It improves community consciousness and responsibility while fostering a “collective sense”. These are “feelings” of considerable importance in the development of new, satisfying, and concerted projects.

UNderstanding Factors that explain Avoidable hospital admission Inequalities-Research study (UNFAIR) addresses how to reduce health inequalities, particularly for avoidable hospital admissions. Our Patient and Public Involvement and Engagement (PPIE) members broached that health inequalities are complex, challenging to understand and communicate. They identified a need to explore diverse views, including people who have a higher risk of health inequalities. With limited public-facing resources relating to the public's understanding or emotions around health inequalities, this project aimed to fill this gap using co-leadership and co-production. Members of the public worked with researchers to co-produce and run PPIE workshops. Thisproject was co-led by a member of the public and a researcher. One online workshop open to anyone in England accompanied by three face-to-face workshops were held. Public contributors, including people living in diverse communities, were invited. Inclusive involvement opportunities were offered including flexible ways of involvement and remuneration. To strengthen the key messages' rigour, transcriptions of the audio-recordings from each workshop, with facilitator notes, were analysed using thematic analysis. From the key messages, an animation was co-produced with public contributors with the public's voice being integral throughout. A total of 58 people took part capturing intersecting and multiple dimensions of marginalisation including people with a range of ages, genders, ethnicities, socioeconomic backgrounds, and members of communities who face exclusion (including people with learning difficulties and experiencing ill-health). The animation highlighted powerful lived experience, for example, some people are dying earlier than expected. Health inequalities conjured up powerful emotions, such as anger and hopelessness. Public views of how to address health inequalities included respecting, accepting and valuing everyone, regardless of, for example, where people live. The animation is publicly available for use by anyone, including decision makers across the health and care system. Through co-leadership and co-production, this project is an example of inclusive PPIE. This project provided a way for the public's voice to influence policy and practice to inform understanding and action to address health inequalities. The animation provides powerful insights into what health inequalities mean to people with examples of lived experience and corroborates the moral argument for action by decision makers. Members of the public, including people who were affected or at higher risk of health inequalities, co-led this project and were involved as co-creators and developers from the inception of the project to completion. Their involvement was integral and documented in full throughout the project.

Neurosurgical trials have a high burden on participants, which underscores the need to involve patients, carers, and the public in trial design to ensure their needs and expectations are met. However, there is currently limited guidance on the establishment, retention, and role of patient and public involvement (PPI) groups in neurosurgical trials, beyond generic guidance, which may contribute to the very low use of PPI in surgical trials. To promote meaningful public involvement in neurosurgical trials based on lived experience, we evaluated our public involvement and developed actionable recommendations. We also co-created a novel support package for neurosurgical trial participants. During the planning of a neurosurgical trial, 14 individuals formed a PPI group, including people with Parkinson's, care partners, and charity staff. This reflective evaluation of the group used mixed-methods data collected using the PIRIT Tracking Tool, meeting polls/reflections, and reflective diaries. Our PPI group co-created the resulting reflections and recommendations, which follow the UK Standards for Public Involvement framework. The support package was co-designed in two online workshops, with 12 participants, including people with Parkinson's and care partners. Our recommendations for meaningful PPI cover inclusive opportunities, working together, support and learning, governance, communications, and impact. For example, we recommend providing all public contributors with an approachable point of contact, defining a clear plan for evaluation and addressing concerns identified through evaluation, and ensuring co-created tasks have clearly defined, tangible outcomes. The support package for neurosurgical trial participants spans before (psychological assessment and support; trial buddies; videos and written case studies from participants in similar trials), during (medical advice and support; Patient Liaison; psychological support), and after (medical, social, and psychological support) trial support. Our practical, generalisable recommendations and novel participant support package aim to strengthen public involvement and enhance care in neurosurgical trials. The support package needs testing within a trial to determine its feasibility and effectiveness.

It has been argued that we have entered a ‘participatory era’ in mental health research and service delivery (e.g. Bromley et al., 2017, p. 295; Siffels et al., 2021). Claims we are experiencing a ‘participatory turn’ are also borne out by more general publication trends. Figure 1 presents a graph of data from Scopus depicting the number of publications about mental health each year that reference common lived experience engagement terms. We celebrate these trends to the extent they reflect a growing interest in how mental health services and systems might beneficially incorporate the input of people who can provide experiential expertise. However, we are also concerned that a growing emphasis on ‘participation’ may lead to exclusion of people with lived experience from higher levels of decision-making, erasure of the history of lived experience advocacy and contribute to the appropriation of lived experience expertise. To suggest that we are just now entering a participatory era ignores (a) the decades of history of lived experience participation that people with experiential expertise fought to initiate (Beresford, 2020). Furthermore, to embrace widespread ‘settling’ for participatory approaches rather than bringing about lived experience leadership in the health sector risks ongoing co-optation of knowledge and tokenistic practices (Scholz, 2022). Indeed, the academic literature has called for lived experience leadership rather than a focus on participation for at least two decades (Gordon, 2005) and advocacy continues today. One of the key findings of our 2016 systematic review of consumer leadership in mental health organisations was that most evidence of lived experience leadership was about organisations run by people with lived experience, with little evidence about lived experience leadership at the higher levels of the health sector or in ‘mainstream’ mental health organisations (Scholz et al., 2017). Participation alone does not go far enough towards redressing epistemic injustice brought about by excluding people with lived experience from control over mental health systems or to realising the benefits of their inclusion (Scholz, 2022). Nonetheless, institutions and organisations continue to talk about participation frameworks and initiatives as ‘novel’. For example, Cochrane recently released what they describe as a ‘bold new framework for consumer (patient, carer, and public) engagement and involvement’ (Cochrane, 2022). Such celebration of a zeitgeist of participation obscures the ongoing undervaluing of lived expertise, and contributes to systems, organisations and projects being stuck in the rhetoric about participation without ever achieving participatory values. Advocates for lived experience leadership argue that people with experiential expertise ought to be ‘involved in, or leading’ agenda-setting or decision-making processes themselves (Roper et al., 2018, p. 2), rather than merely supporting or informing others' agendas or decision-making (as in participatory, engagement or involvement approaches). As instances of policy, services, research and education agendas being set by people with experiential expertise remain scarce, claims that we are in a ‘participatory era’ may overinflate the extent to which people with lived experience are truly partners in or leaders of decision-making, and obscure the fact that experiential expertise is still undervalued (Scholz et al., 2018). Earlier versions of this editorial were presented at the National Cancer Survivorship Conference in Tarntanya/Adelaide in March 2023, at the conference of the International Society of Critical Health Psychology in Rancagua, Wallmapu, in July 2023, and in research seminars to the Victorian Comprehensive Cancer Centre Consumer Engagement in Research Community of Practice in Naarm/Melbourn, the Clinical and Health Sciences Academic Unit in Tarntanya/Adelaide, and the Flinders Health & Medical Research Institute in Tartanya/Adelaide. The authors would like to thank those who organized, attended, and engaged with these presentations. None. The authors have no conflicts of interest to declare. Data sharing is not applicable to this article as no new data were created or analyzed in this study.

Effective engagement with stakeholders is key in health-care research and intervention development. There is currently a lack of evidence relating to the involvement of co-producers with Parkinson’s-related communication difficulties. This article provides a critical reflection on co-producing a novel speech and language therapy intervention (Better Conversations with Parkinson’s) with people living with Parkinson’s who have an interest in, or lived experience of, communication difficulties. Evaluation is based on qualitative comments and survey responses from patient and public involvement group members, documentation and outputs from the patient and public involvement group, and reflection using the Public Involvement Impact Assessment Framework. The co-production group, research team and organisation highly valued the expertise and collaboration as equal partners gained through co-production. Key enablers included skilled facilitation and adequate time and funding. Consideration should be given to the format of participation (online or face-to-face), recruitment strategies and the role of patient and public involvement, in order to improve access to underserved groups and strengthen the voice of public and patient involvement members. Co-production with people living with Parkinson’s and communication difficulties allowed the creation of a more credible, relevant intervention which responds to the needs of key stakeholders, and it was a positive experience with personal benefits for those involved. We propose offering a flexible choice of co-production methods to accommodate the differing experiences of patient and public involvement members with Parkinson’s and communication difficulties.

Co-created research outputs are considered the gold standard in research translation projects. It is often a requirement for gaining funding to work with affected community members and partners when working to provide resources or support communities with a lived experience of trauma. However, there is limited literature on combining a co-creation framework and trauma-informed approaches. This paper adds to these studies by describing our project, which combined co-creation with trauma-informed principles to work with potentially vulnerable communities, specifically service families who experience high family mobility (e.g., military and first responder families). The approach taken prioritised safety, trust, transparency, peer support, collaboration, empowerment, and voices of those with lived and living experiences, while also emphasising participant choice to ensure safe engagement and maintain research partner commitment. After many rounds of feedback from those with lived and living experience (over 35 initial co-creation participants), we tested the suitability of the resources on other affected community and research partners. Twelve (additional) participants provided rich feedback that was analysed using inductive thematic analysis. This included the appropriateness of the resources for the age group, the use of children’s narrative story techniques and engagement, increasing caregiver capacity and knowledge, and integration into family, educational and professional settings. We examine here potential strategies to better support this type of research and propose an improved research framework that combines co-creation and a trauma-informed approach. Although complex and time-consuming, this combined approach offers an effective means of developing targeted supports. Further testing, research and refinement with potentially vulnerable populations are needed, and successful implementation may require institutional research systems to adapt to support this approach in the future.

BackgroundPatient 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 ObjectiveAn 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.FindingsThirty‐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 ImplicationsInternational 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 ContributionPPI 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.

Myriad studies show that politically-salient events influence civic and political engagement. Yet, on the other hand, decades of research indicate that familial factors mold political and civic dispositions early in life, before an individual experiences political events outside the family. Viewing these two lines of research together, we ask if individuals’ political and civic dispositions might be influenced not solely by their own experiences, but, also, by the experiences of those individuals who create their family environment—namely, their parents. Do parents’ life experiences—before the birth of their children—affect their offspring’s public engagement? To answer that question, we examine how the assignment of military service, via the Vietnam-era Selective Service Lotteries, affected rates of public participation among the children of draft-eligible men. Our analysis finds a negative relationship between a father’s probability of draft-induced military service and his offspring’s public participation. In addition to highlighting how parents’ life experiences can influence the social behavior of their children, this finding challenges the prevailing view that the Vietnam conflict did not contribute to declining civic engagement and it shows how experiences within bureaucratic institutions can yield long-standing effects on politically-relevant behaviors.

The use of literature and creative writing as public scholarship bridges the humanities, social sciences, and social activism. Public scholarship merges creative writing, democratic impulses, and the power of activism. In this chapter, the authors argue for the power and possibilities of literature as public scholarship for transforming our communal perspectives and self-perspectives and for contributing to meaningful public dialogue and the public good. The chapter engages the following questions by examining public literature in virtual and nonvirtual spaces: How can creative writing and literature alter, transform, and reimagine our experiences and definitions of public space? How does literature in everyday spaces democratize our lived experiences and empower our voices? The authors provide examples of poetry, creative nonfiction, fiction, and hybrid forms as public scholarship and offer resources for readers interested in their own public scholarship projects using literary forms.

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.