Public Contributors Research Articles

Ameliorating epistemic injustice in practice: Communication strategies in a research project with refugee youth coresearchers.

Many researchers want to include seldom involved groups, such as refugees and youth, in patient and public involvement (PPI), but experience a number of barriers. The PPI research community calls for critical evaluations that are prospective, data-based and conducted by researchers and public contributors together. In this study, we conducted a longitudinal evaluation of a core activity in all collaborations: communication strategies. The aim was to evaluate the communication strategies adopted throughout a research project with refugee youth coresearchers. This article is based on the evaluation of a project where refugee youth were involved in the online adaptation of a group-based programme for youth with posttraumatic stress. Behavioural observations and field notes collected during the project were analysed with qualitative content analysis and a readability index, and discussed through the lens of epistemic injustice. The article was cowritten by researchers and refugee youth. Four manifest categories were identified: Facilitating engagement through coplanning and circumstantial flexibility; Different needs require different channels; It's not just about the channel-facilitation skills matter; Finding a common language opens a communicative flow. In addition, a latent underlying theme reflecting the role of trust was identified: Interactive moments facilitate trust-trust facilitates richer involvement. At the core of the identified communication strategies were strengthening relationship-building and actively facilitating involvement. Establishing trusting relationships enabled refugee youth to share input. The communication strategies increased hermeneutical justice by contributing to a common understanding; thus, taking a step towards ameliorating epistemic injustice. This article is a participatory analysis of a PPI process; it was written in collaboration between researchers and refugee youth coauthors, who were all previously involved in the evaluated project.

Reflections from the 'Hold the door open' project: Inviting older adults across the UK to shape dissemination of health research findings.

This project sought to expand patient and public involvement (PPI) practices to the development of research finding dissemination with people aged 55+ years. The project is innovative due to its UK-wide approach and use of PPI to plan better ways to share findings of health research with older adults, extending PPI beyond research project initiation to support dissemination activities. The aim of this study is to understand how to develop effective public engagement activities with older adults to disseminate findings of health research. We hope to promote greater inclusivity and advance our understanding of this demographic. This project combined three approaches: (i) an online questionnaire to ask what activities older adults enjoy; (ii) online planning workshops seeking public contributors'input in event planningand (iii) community events to share research findings and raise awareness of PPI. Activities were carried out in Cardiff, Belfast, Glasgow and Tewkesbury. The planning workshops clarified that in-person activities and offering options for activities were important. Based on feedback from our contributors, all our events focused around a talk and questionand answersession. Other short activities included light exercise and a writing activity. Our multiphase approach helped us develop informative activities that reflected the questionnaire results and the feedback from the workshops, as we tailored our events to each location. A phased approach allowed both researchers and contributors to gradually deepen their understanding. Further awareness raising is needed to develop the role older adults currently hold in health research activities. Working closely with existing communities can help broaden diversity. Thirty-three public contributors helped facilitate this project. Two of these also contributed to this article by writing a reflection of their experiences, one of whom also provided feedback for the article.

Working with public contributors in Parkinson's research: What were the changes, benefitsand learnings? A critical reflection from the researcher and public contributor perspective.

This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. APPROACH TOPATIENT AND PUBLIC INVOLVEMENT (PPI): This paper reports on how PCs shaped the design and development of the PRIME-UK research programme study materials through input into information leaflets, consent formsand other patient-facing documents used across three studies within the PRIME-UK research programme. The PRIME-UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross-sectional study, arandomised control trialand a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomesand impacts fromPPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research processand that timely communication and the use of face-to-face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent formsand other patient-facing documents used for studies within the PRIME-UK research programme. In addition, PCs evaluated their involvement using impact logs and co-authored this paper.

The INSIGHT project: reflections on the co-production of a quality recognition programme to showcase excellence in public involvement in health and care research

BackgroundThe quality of Patient and Public Involvement (PPI) in healthcare research varies considerably and is frequently tokenistic. We aimed to co-produce the Insight | Public Involvement Quality Recognition and Awards programme, based on the UK Standards for Public Involvement (UKSPI) alongside an incremental scale designed by Expert Citizens (a lived experience-led community group), to incentivise and celebrate continuous improvement in PPI.MethodsWe used Task and Finish Groups (19/44 [43%] public contributor membership) to co-produce the programme which we piloted in three organisations with different healthcare research models. We used surveys and review sessions to capture learning and reflections.ResultsWe co-created:A Quality descriptor matrix comprising four incremental quality levels (Welcoming, Listening, Learning, Leading) for each UKSPI standard.An assessment framework including guidance materials, self-assessment form and final report template.An assessor training package.The quality awards event format and nomination form. These materials were modified based on pilot-site feedback.Of survey respondents: 94.4% felt they had made at least ‘Some’ personal contribution (half said ‘Quite a lot’/‘A great deal’), 88.9% said they were ‘Always’/‘Often’ able to express their views freely and, 100% stated the programme would have ‘A lot of impact’/‘Quite a bit of impact’.During the project, we identified the importance of taking time to explain project aims and contributor roles, adapting to the needs of individual contributors and, using smaller bespoke sessions outside the main Task and Finish Groups.ConclusionsWe co-produced and piloted a quality recognition programme to incentivise and celebrate continuous quality improvement in PPI. One public contributor stated, “I feel strongly that the Insight framework and awards will raise awareness of the [public involvement] work going on in many community settings. [It] is likely to result in better sharing of positive practice, incentivising research groups of any size to start work or to improve the quality of [PPI] could be one of the main benefits. I’m excited that if this initiative takes off, regionally and then in the longer term nationally, it could be a significant step in advancing the [public] voice.”

A conceptual framework for early life determinants of future multimorbidity

Abstract Background Social, biological and environmental factors in early life, defined as the period from preconception until age 18, play a role in shaping the risk of Multiple Long-Term Condition Multimorbidity (MLTC-M). There is a need for conceptual framing of these factors to inform and shape future research on aetiology and for modelling prevention scenarios of MLTC-M. We developed a conceptual framework to characterise early life determinants of future MLTC-M risk. Methods The conceptualisation of determinant domains was shaped by reviewing existing research evidence and policy, and co-produced with public contributors living in the UK via two workshops, one with 8 contributors age 18-30 regardless of MLTC-M status, and one with 12 contributors age 40-65 who all self-reported MLTC-M. Results Domains included: 1.Prenatal, antenatal, neonatal and birth; 2.Adverse childhood experiences; 3.Child health, check-ups and screening; 4.Developmental attributes; 5.Child education and health literacy; 6.Demographics; 7. Parent health and health behaviours; 8.Socioeconomics; 9.Parental family factors; 10.Neighbourhood, physical environment and health care systems; 11.Health behaviours and diet; 12.Religion, spirituality and culture. Some domains identified by the public contributors, such as religion, health screening, check-ups, and diet, were not well represented within the research evidence or policy documents. Conclusions This co-produced conceptualisation can inform research to investigate the early life characteristics of population groups at risk of future MLTC-M, as well as policy directions towards prevention of early-onset MLTC-M. Additionally, it can shape the direction of further data collection, particularly with respect to the understudied domains identified by our public contributors. Key messages • We developed a conceptual framework to characterise early life determinants of multimorbidity. • This conceptualisation can inform future research and policy directions towards prevention of multimorbidity.

Exploring the role of ChatGPT in rapid intervention text development

Background There have been successful applications of AI to answering health-related questions, which suggests a potential role for AI in assisting with development of intervention text. This paper explores how ChatGPT might be used to support the rapid development of intervention text. Methods Three case studies are presented. In the first case study, ChatGPT (using GPT-4) was asked to generate sleep advice for adolescents. In case study two, ChatGPT (using GPT-3) was asked to optimise advice for people experiencing homelessness on staying hydrated in extreme heat. Case study three asked ChatGPT using GPT-3 and GPT-4 to optimise an information sheet for participation in a study developing an intervention for maternal blood pressure. Outputs were evaluated by the researchers who developed the text, and in case studies two and three were shown to public and patient contributors for feedback. Results ChatGPT was able to generate informative advice about sleep in case study one and was able to accurately summarise information in case studies two and three. In all three cases, elements or aspects were omitted that were included in the researcher-generated text that was based on behaviour change theory, evidence and input from public and patient contributors. However, in case study three, feedback from public contributors suggested ChatGPTs outputs were preferred to the original, although the outputs omitted information and were not at the requested accessible reading level. Conclusions ChatGPT was able to accurately generate and summarise health information. However, this information typically excluded core behaviour change techniques and was sometimes inappropriate for the target users. There is likely to be a valuable role for generative AI in the intervention development process, but this will need to be combined with detailed scrutiny and input from researchers and public contributors.

Diversity in patient and public involvement in healthcare research and education-Realising the potential.

Patient and public involvement (PPI) is an increasing priority in health-related research and education. Attracting and supporting people from different demographic groups to give up their time and get involved is important to help ensure that all parts of society are empowered, represented and their voices heard in decisions that may affect their health and quality of life. (1) To determine if a demographically diverse cross-section of society would be interested in contributing to healthcare research and education. (2) To understand factors that can act as barriers and enablers to effective and diverse PPI. PPI survey data was collected via engagement events, with the aim of scoping interest in PPI from a diverse public. A Focus Group study involving members of the public, academic and professional service staff, was then conducted to gain a deeper understanding around the barriers and enablers of diversity within PPI. 71% of a diverse rich public indicated they would like to get involved in healthcare research and teaching. 76% of survey respondents indicated that they would be happy to share a personal or family experience of healthcare. The two biggest factors impacting on our cohort getting involved are' availability of time' and 'being aware of PPI opportunities'. These factors may disproportionally affect specific groups. Shared and individual PPI enablers and barriers were identified across all stakeholder groups within the Focus Group Study, as well as generic and novel factors that would impact on an institutions' ability to improve PPI diversity. These data points confirm a demographically diverse public's appetite to get involved in academic health research and teaching. This needs to be recognised and harnessed to ensure public contributor networks are representative of society. Equality Impact Assessments should be undertaken in relation to all PPI opportunities. There is a need to recognise the investment of time and resources required to build mutually beneficial relationships with diverse communities as well as the development of inclusive 'fit for purpose' PPI infrastructures to support the uptake of diverse PPI contributors. This study involved members of the public responding to a short survey. Public contributors made up one of the three focus groups. The School of Medicine lead public contributor was also involved in the preparation of this manuscript.

Rheumatology nurses' perceptions of undertaking a postgraduate education programme: A phenomenological study.

The expansion of the role of the rheumatology nurse specialist led to the instigation, in 1999, of the first Masters programme in rheumatology nursing, with the aim of supporting clinical advancement with evidence-based practice. This study explored the experience of rheumatology nurses undertaking postgraduate study at Masters level. (1) To explore the perceptions and experiences of clinical nurse specialists undertaking a Masters programme in Rheumatology Nursing, including perceptions of impact. (2) To identify future educational needs. Ten rheumatology nurses who had completed a Masters degree in rheumatology nursing participated in a semi-structured video link or telephone interview conducted between 17th March 2021-17th May 2021. Interpretive phenomenological analysis was undertaken by two researchers and two public contributors. Four themes were identified: (i) Increased confidence and the development of new clinical skills. (ii) The perceived impact on the organisation; (iii) Benefits of face-to-face learning; and (iv) Continuing evolution of the rheumatology nurse specialist role. Participants reported increased confidence in clinical skills and felt that their learning had benefited their employing organisation. However, lack of time and insufficient managerial support could impede the implementation of new skills. Learning examination techniques, engagement in learning and peer support were seen as advantages of face-to-face learning. Future educational needs focused on diagnostic and prescribing skills. Participant learners perceived that completing a face-to-face Masters in rheumatology increased confidence in delivering new clinical skills and fostered peer networks, whilst also benefiting their employing organisations. There is a need for organisational support to apply learning to the clinical setting.

Experiences and views of people who frequently call emergency ambulance services: A qualitative study of UK service users.

People who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency servicesand is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment. We used a two-stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third-sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results. People said they make frequent calls to emergency ambulance services as a last resortwhen they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers. People who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users'motivations and requirements to inform design and delivery of accessible and effective services. People with relevant experience were involved indeveloping, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee.

A public panel reviews applications and questions applicants: Team member and public contributor discuss a transparent and inclusive approach to data access reviews

ObjectivesWe created a panel with members of the public and longitudinal study participants who review our data access requests. This panel forms an integral part of our data access application process, giving the public a say who can access the data for research.
 MethodsWe advertised our lay member vacancies using social media, newsletters, word of mouth and the internet. We appointed six people to the public panel. Our panel includes study participants, NHS service users, parents, carers, and people with experience of disability, neurodiversity, and long-term health conditions.
 The Panel Terms of Reference were created with help from stakeholders and study teams involved in longitudinal studies that involve the public in data access applications. This ensured that the purpose of the panel was clear. The panel reviews lay summaries and makes sure that researchers have adequate public involvement in their project.
 ResultsPanel members have reviewed 28 applications. Researchers present their research at an online meeting with the panel then answer questions from the panel members. We publish meeting minutes on our website for transparency.
 A 6-month review was overwhelmingly positive - all panel members indicated they felt valued. They felt able to challenge and question researchers as part of the data access application process. This provides a level of public scrutiny to our work.
 “I feel there’s a real value in the panel. You get a real sense that this has got such potential to make a contribution.” (panel member)
 We are further developing the Panel Terms of Reference with panel members. We will consider additional areas of responsibility, for example, public benefit review.
 ConclusionWe regularly review how to improve public involvement in our work. The panel has proven its value during our application process. Therefore we are exploring with the panel a new approach to assess the public benefit of applications and what is meant by ‘public benefit research’.

Coproduction of a resource sharing public views of health inequalities: An example of inclusive public and patient involvement and engagement.

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.

Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol

Background Secondary use of health data provides opportunities to drive improvements in healthcare provision, personalised medicine, comparative effectiveness research, health services innovation, and policy and practice. However, secondary data use requires compliance with relevant legislation, implementation of technical safeguards, ethical data management, and respect for data sharers. Existing evidence suggests widespread support for secondary use of health data among the public, which co-exists with concerns about privacy, confidentiality and misuse of data. Balancing the protection of individuals’ rights against the use of their health data for societal benefits is of vital importance, and trust underpins this process. The study protocol explores how to build public trust and confidence in the secondary use of health data through all key stakeholder groups in Ireland, towards developing a culture that promotes a safe and trustworthy use of data. Methods This study will adopt a qualitative cross-sectional approach conducted in accordance with the Consolidated Criteria for Reporting Qualitative Research COREQ guidelines. Participants in the study will include academics and researchers; healthcare professionals, data protection, ethics and privacy experts and data controllers; pharmaceutical industry and patients and public. Purposive and convenience sampling techniques will be utilised to recruit the participants, and data will be collected utilizing focus groups that may be supplemented with semi-structured interviews. Data will be coded by themes using reflexive thematic analysis (TA) and collective intelligence (CI) will be convened post-analysis to explore the preliminary findings with the participants. Ethics and Dissemination Ethical approval was obtained from the Royal College of Surgeons in Ireland Research Ethics Committee (REC202208013). Final data analysis and dissemination is expected by Q1 2024. Findings will be disseminated through peer-reviewed journal publications, presentations at relevant conferences, and other academic, public and policy channels. Lay summaries will be designed for Public and Patient Involvement (PPI) contributors and general public.

Planning ahead for research participation: survey of public and professional stakeholders’ views about the acceptability and feasibility of advance research planning

BackgroundAnticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that ‘proxy’ decisions about research are based on their wishes and preferences.MethodsA cross-sectional survey was conducted with two stakeholder groups (members of the public including people living with capacity-affecting conditions and family members; researchers and other professionals) who were recruited via research registries and other routes. Online questionnaires were used to capture the perspectives of the two groups. Responses were analysed using descriptive statistics and content analysis.ResultsA total of 327 participants (members of the public n = 277, professionals n = 50) completed the survey (November 2022 - March 2023). ARP was supported by 97% of public contributors and 94% of professionals. Participants thought that ARP should include the person’s general wishes about research, specific types of studies, and who should make decisions on their behalf. They identified a number of challenges, including how ARP could take account of changes in individuals’ preferences or circumstances whilst protecting their rights and interests. Implementation barriers included the potential time, complexity, and cost involved. These could be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust played a key role, including underpinning who should support the delivery of ARP, how they are trained, and when it is undertaken.ConclusionsThere were high levels of support for introducing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. Future activities should include developing ARP interventions alongside training and other resources, and also focus on public awareness campaigns, and engaging policymakers and other stakeholders.

P09.03.A DEVELOPMENT OF A CORE OUTCOME SET FOR USE IN ADULT PRIMARY GLIOMA PHASE III INTERVENTIONAL TRIALS - A MIXED METHODS STUDY

Abstract BACKGROUND Glioma patients’ high symptom burden and the poor prognosis of high grade glioma has emphasised quality of survival and overall health-related quality of life (HRQOL) throughout the disease trajectory in clinical trials. Patient-reported outcomes (PROs) allow insight into how investigative treatment affects patients’ perceived functioning, complementing other outcome data (e.g. survival, radiological response) in clinical decision-making. Creating robust evidence requires effective data synthesis and meta-analyses across trials, underpinned by consistent trial outcome measurement, analysis and reporting. However, a standard ontology is lacking in cancer clinical trials, and brain tumours specifically, and selective outcome reporting is common. Core outcome set (COS) development is one means to improve data synthesis. The COBra project aimed to develop a COS for use in glioma phase III trials in support of those goals. Given stakeholder interest in PROs and prioritising the patient perspective, we also undertook initial exploration of which items could be patient reportable. MATERIAL AND METHODS A COS for adult primary glioma phase III interventional trials was developed through: (1) trial registry review and systematic review of qualitative studies; (2) interviews with glioma patients and caregivers; (3) outcome list de-duplication; (4) two-round Delphi process and outcome list rating; (5) a consensus meeting to finalise the COS. Patient-reportable COS outcomes were identified by cross-referencing the final COS outcomes with outcomes and PRO measures (PROMs) reported in the trial registry review. Activities were guided by UK Patient and Public Involvement standards and public contributors were core research team members. RESULTS A COS consisting of 19 outcomes grouped into seven outcome domains (Survival, Adverse Events, Activities of Daily Living, HRQOL, Seizure Activity, Cognitive Function and Physical Function) was finalised for use in glioma trials using this structured approach. Mapping PROMs identified in the registry review suggests that sub-domains of 6/7 outcome domains in the final COS can be patient-reported (adverse events, activities of daily living, HRQOL, seizure activity, neurocognitive function, physical function). Other currently unidentified instruments may also be suitable. Further research will identify appropriate measurement tools, promote accessible PRO delivery, and validate this COS for wider use. CONCLUSION A COS for glioma trials was developed, comprising seven outcome domains. Development of this COS coincides with growing regulatory interest in patient-reported data. To optimise data synthesis and prioritise the patient perspective, opportunities to collect data in this way should be promoted and taken. As such, this COS could be considered for use in registrational trials after further validation.

Standard Involvement Is Not Enough: A Mixed Method Study of Enablers and Barriers in Research Meetings with Forced Migrants

Abstract Although participatory approaches in health research are increasingly used, critical voices are being raised around lack of diversity among the public contributors involved. This article explores enabling and hindering factors in participatory meetings with forced migrants involved as public contributors in health research, using a convergent parallel mixed methods design including behavioural observations and questionnaires, with the aim of contributing to practices of meaningful and inclusive involvement in research. Our findings indicated that relationship-building and adapting to team development over time were key. Additionally, researcher responsivity and transparency enabled relevant contributions, but few decisions were taken. Although linguistic barriers existed and were rated higher by the researchers, engaging interpreters as co-facilitators of the meetings enabled nuanced discussions. In addition to following PPI recommendations, involving public contributors with experience of forced migration requires considering relationship-focused factors; inclusive communication, relationships and trust, and process-focused factors: where and how decisions are taken.

A conceptual framework for characterising lifecourse determinants of multiple long-term condition multimorbidity.

Social, biological and environmental factors in early-life, defined as the period from preconception until age 18, play a role in shaping the risk of multiple long-term condition multimorbidity. However, there is a need to conceptualise these early-life factors, how they relate to each other, and provide conceptual framing for future research on aetiology and modelling prevention scenarios of multimorbidity. We develop a conceptual framework to characterise the population-level domains of early-life determinants of future multimorbidity. This work was conducted as part of the Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity (MELD-B) study. The conceptualisation of multimorbidity lifecourse determinant domains was shaped by a review of existing research evidence and policy, and co-produced with public involvement via two workshops. Early-life risk factors incorporate personal, social, economic, behavioural and environmental factors, and the key domains discussed in research evidence, policy, and with public contributors included adverse childhood experiences, socioeconomics, the social and physical environment, and education. Policy recommendations more often focused on individual-level factors as opposed to the wider determinants of health discussed within the research evidence. Some domains highlighted through our co-production process with public contributors, such as religion and spirituality, health screening and check-ups, and diet, were not adequately considered within the research evidence or policy. This co-produced conceptualisation can inform research directions using primary and secondary data to investigate the early-life characteristics of population groups at risk of future multimorbidity, as well as policy directions to target public health prevention scenarios of early-onset multimorbidity.

Study within a trial of electronic versus paper-based Patient-Reported oUtcomes CollEction (SPRUCE): study protocol for a partially randomised patient preference study

IntroductionPatient-reported outcomes (PRO) are currently collected from trial participants using paper questionnaires by the Clinical Trials and Statistics Unit at The Institute of Cancer Research (ICR-CTSU). Streamlining PRO collection using...

Collaborative evaluation of a pilot involvement opportunity: Cochrane Common Mental Disorders Voice of Experience College.

Involving consumers in systematic reviews can make them more valuableand help achieve goals around transparency. Systematic reviews are technically complex and training can be needed to enable consumers to engage with them fully. The Cochrane Common Mental Disorders group sought to engage people with lived experience of mental health problems in the Voice of Experience College, three workshops introducing them to systematic review methods and to opportunities to contribute as Cochrane consumers. We aimed to collectively evaluate the College from the perspective of both facilitators and consumers, to critically reflect on the experience, and to identify how the College could be sustained and spread to other review groups. This study was a longitudinal qualitative and collaborative evaluation, structured around normalisation process theory. Both facilitators and consumers were involved in not only providing their perspectivesbutalso reflecting on these together to identify key learning points. The workshops were positively evaluated as being engaging and supportive, largely due to the relational skills of the facilitators, and their willingness to engage in joint or two-way learning. The College suffered from a lack of clarity over the role of consumers after the College itself, with a need for greater communication to check assumptions and clarify expectations. This was not achieved due to pandemic disruptions, which nevertheless demonstrated that resources for involvement were not prioritised as core business during this period. Soft skills around communication and support are crucial to effective consumer engagement. Sustaining involvement requires sustained communication and opportunities to reflect together on opportunities and challenges. This requires committed resources to ensure involvement activity is prioritised. This is critical as negative experiences later in the involvement journey can undermine originally positive experiencesif contributors are unclear as to what their involvement can lead to. Open discussions about this are necessary to avoid conflicting assumptions. The spread of the approach to other review groups could be achieved by flexibly adapting to group-specific resources and settings, but maintaining a core focus on collaborative relationships as the key mechanism of engagement. Public contributors were collaborators throughout the evaluation processand have co-authored the paper.

Participatory evaluation of the process of co-producing resources for the public on data science and artificial intelligence

BackgroundThe growth of data science and artificial intelligence offers novel healthcare applications and research possibilities. Patients should be able to make informed choices about using healthcare. Therefore, they must be provided with lay information about new technology. A team consisting of academic researchers, health professionals, and public contributors collaboratively co-designed and co-developed the new resource offering that information. In this paper, we evaluate this novel approach to co-production.MethodsWe used participatory evaluation to understand the co-production process. This consisted of creative approaches and reflexivity over three stages. Firstly, everyone had an opportunity to participate in three online training sessions. The first one focused on the aims of evaluation, the second on photovoice (that included practical training on using photos as metaphors), and the third on being reflective (recognising one’s biases and perspectives during analysis). During the second stage, using photovoice, everyone took photos that symbolised their experiences of being involved in the project. This included a session with a professional photographer. At the last stage, we met in person and, using data collected from photovoice, built the mandala as a representation of a joint experience of the project. This stage was supported by professional artists who summarised the mandala in the illustration.ResultsThe mandala is the artistic presentation of the findings from the evaluation. It is a shared journey between everyone involved. We divided it into six related layers. Starting from inside layers present the following experiences (1) public contributors had space to build confidence in a new topic, (2) relationships between individuals and within the project, (3) working remotely during the COVID-19 pandemic, (4) motivation that influenced people to become involved in this particular piece of work, (5) requirements that co-production needs to be inclusive and accessible to everyone, (6) expectations towards data science and artificial intelligence that researchers should follow to establish public support.ConclusionsThe participatory evaluation suggests that co-production around data science and artificial intelligence can be a meaningful process that is co-owned by everyone involved.

Beyond dry eye: The greater extent of Sjögren's systemic disease symptoms, the impact of COVID-19 and perceptions towards telemedicine identified through a patient co-designed study.

Sjögren's ('SHOW-grins') is a chronic debilitating autoimmune disease characterised by dry eyes and dry mouth, secondary to reduced exocrine function of both the lacrimal and salivary glands. The persistent, severeand serious systemic complications of Sjögren's are poorly understood and often unappreciated, resulting in significant morbidity and treatment burden. This study aimed to explore the experiences of those living with Sjögren's, specifically access to healthcare and attitude towards telemedicine. Additionally, we sought to collect information regarding the impact of the pandemic on their quality of life (QoL). One hundred and ninety-four individuals attended an Irish Sjögren's Webinar. Attendees were invited to participate in two online surveys after the webinar. The first survey gathered information related to demographics, diseaseand experiences during the COVID-19 pandemic. A combination of bespoke items and validated questionnaires (EULAR Sjögren's Syndrome Patient Reported Index [ESSPRI], COVID-19 Impact on Quality of Life[COV19-QoL]) was used. The second survey consisted of a shortened Telehealth Usability Questionnaire. Both were prepared in collaboration with a patient advocate. Survey 1: n = 76; response rate = 39.2%. Thirty-one respondents (41.4%) to survey 1 reported a delay of ≥5 years between the onset of symptoms and diagnosis. Dry mouth was the most common symptom experienced (76.8%, n = 63), followed by dry eye (74.4%, n = 61), fatigue (57.3%, n = 47) and joint pain (53.7%,n = 44), but a range of other symptoms were also reported. COV19-QoL results indicated that the pandemic had a detrimental effect on participants' overall QoL (4.0 ± 1.0) and physical health (4.0 ± 0.8) in particular. COV19-QoL and ESSPRI scores were moderately correlated (0.36, p = .002). Over 70% of respondents had a medical appointment cancelled, delayed or rescheduled (n = 60). Survey 2: n = 57; response rate = 29.4%. Those that had interacted with telemedicine reported largely positive experiences with the virtual model. Clinicians should be aware of the range of symptoms experienced by patients with Sjögren's beyond those of sicca (dry eye and dry mouth) and fatigue. COVID-19 has negatively influenced the self-reported health and well-being of those with Sjögren's, particularly those with higher symptom scores. It is vital that optimised telemedicine models are implemented to ensure continuity in the provision of healthcare for those with chronic illness such as Sjögren's and in preparation for possible future pandemics. A group of people living with Sjögren's co-designed the structure and content of the webinar where the survey was shared. A public and patient involvement(PPI) contributor also collaborated in the selection of questionnaires used in the study, ensuring that the questions asked would best reflect the priorities of patients. They contributed to the writing of this manuscript as co-authors. Additionally, the research team and Sjögren's patients who contributed to this work have gone on to establish Sjögren's Research Ireland, a collaboration between patient advocates, researchersand PPI facilitators.