Co-designing care for multimorbidity: a systematic review.

BACKGROUND: The co-design of health care enables patient-centredness by partnering patients, clinicians and other stakeholders together to create services. METHODS: We conducted a systematic review of co-designed health interventions for people living with multimorbidity and assessed (a) their effectiveness in improving health outcomes, (b) the co-design approaches used and (c) barriers and facilitators to the co-design process with people living with multimorbidity. We searched MEDLINE, EMBASE, CINAHL, Scopus and PsycINFO between 2000 and March 2022. Included experimental studies were quality assessed using the Cochrane risk of bias tool (ROB-2 and ROBINS-I). RESULTS: We screened 14,376 reports, with 13 reports meeting the eligibility criteria. Two reported health and well-being outcomes: one randomised clinical trial (n = 134) and one controlled cohort (n = 1933). Outcome measures included quality of life, self-efficacy, well-being, anxiety, depression, functional status, healthcare utilisation and mortality. Outcomes favouring the co-design interventions compared to control were minimal, with only 4 of 17 outcomes considered beneficial. Co-design approaches included needs assessment/ideation (12 of 13), prototype (11 of 13), pilot testing (5 of 13) (i.e. focus on usability) and health and well-being evaluations (2 of 13). Common challenges to the co-design process include poor stakeholder interest, passive participation, power imbalances and a lack of representativeness in the design group. Enablers include flexibility in approach, smaller group work, advocating for stakeholders' views and commitment to the process or decisions made. CONCLUSIONS: In this systematic review of co-design health interventions, we found that few projects assessed health and well-being outcomes, and the observed health and well-being benefits were minimal. The intensity and variability in the co-design approaches were substantial, and challenges were evident. Co-design aided the design of novel services and interventions for those with multimorbidity, improving their relevance, usability and acceptability. However, the clinical benefits of co-designed interventions for those with multimorbidity are unclear.

Using evidence-based co-design to develop a hybrid delivered exercise intervention that aims to increase confidence to exercise in people with haemophilia.

INTRODUCTION: Due to advances in treatments, people with haemophilia (PWH) are living longer. They are not as active as the general population due to joint damage and lack confidence to be active due to concerns about further bleeds and pain. There is a need to facilitate healthy aging through promotion of physical activity (PA) and exercise. Changing patient beliefs and increasing physical literacy and confidence to move are thought to be key to helping PWH become more active. AIM: This paper describes the development of an exercise and behaviour change intervention to improve confidence to exercise in PWH. METHODS: The 4-stage Medical Research Council framework for complex intervention development was used. RESULTS: Stakeholders included 17 PWH and 7 physiotherapists working in haemophilia. Seven online focus group meetings were held. The final intervention is a hybrid 12-week physiotherapist led progressive exercise programme. Classes are 45 min including Pilates, High intensity interval training and balance elements, together with discussion sessions focusing on PA recommendations, the types and benefits of different exercise styles and the effects of PA, together with the effects of aging for PWH. The COM-B model of behaviour change was used to develop the intervention. CONCLUSION: Co-design helps to produce an intervention that understands the stakeholders needs. Through this process the intervention developed to incorporate not only increasing PA but also confidence to exercise. The use of behaviour change theory identified the behaviour techniques included in the intervention and aims to increase physical literacy in this population.

Pilot study of a virtual weight management program for Duchenne muscular dystrophy.

INTRODUCTION/AIMS: Young people with Duchenne muscular dystrophy (DMD) are at increased risk of obesity. Weight management is important to families; however, several barriers exist. This pilot study aimed to investigate the feasibility and acceptability of a co-designed weight management program for DMD. METHODS: The Supporting Nutrition and Optimizing Wellbeing Program (SNOW-P) was a single-arm diet and behavior weight management intervention delivered via weekly telehealth/phone visits over 6 weeks to young people with DMD and obesity (body mass index (BMI) ≥95th percentile) and their caregivers. Using an online survey, caregivers of boys with DMD were consulted on the structure and topics delivered in SNOW-P. Primary outcomes were feasibility and acceptability; secondary outcomes were weight, physical function, and quality of life at 6- and 12-weeks follow-up. RESULTS: Of nineteen eligible participants, eight were enrolled (median age 11.4 years, range 4.9-15.8), and seven completed the program. Visit attendance was high (88%-100%); most participants reported high satisfaction and that participation was easy. Suggested changes included online and visual DMD-specific resources. At 6-weeks, median change in weight z-scores was -0.01 (IQR: -0.23, 0.17) indicating that on average, weight gain tracked as expected for age. Waist circumference measured by caregivers lacked accuracy and the completion rate of caregiver-reported secondary outcome measures (e.g., food diaries) was low. DISCUSSION: A co-designed, telehealth/phone weight management program appeared to be feasible and acceptable in a small group of boys with DMD. An adapted, hybrid telehealth and face-to-face program is recommended for efficacy testing.

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy.

INTRODUCTION/AIMS: Obesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD. METHODS: We surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD. RESULTS: Fifty-three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self-consciousness (71%), a negative impact on self-esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six-week weight management program addressing appetite management and screen time. DISCUSSION: Managing weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.

Codesign of Lynch ChoicesTM : Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways.

BACKGROUND: Resources including Patient Decision Aids (PtDA) are useful and valued by patients and clinicians to provide information and complement shared decision-making. Despite their promise, few PtDA exist for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap, partnering with patients to codesign Lynch ChoicesTM , a PtDA website for families with Lynch Syndrome. In addition to a Patient Reference Panel, we purposively invited an international stakeholder panel including charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to optimise translation of research findings to improve care. METHODS: Patient/stakeholder suggestions were incorporated in a transparent Table of Changes and prioritised using the Person-Based Approach throughout planning and codesign of Lynch ChoicesTM . An interactive stakeholder meeting was convened to identify barriers and facilitators to clinical implementation of the PtDA. RESULTS: Patient and stakeholder partnerships drove the direction of the research throughout codesign, resulting in several iterative refinements to the PtDA prior to roll out including the addition of illustrations/videos, clearer presentation of cancer risks and increased accessibility for lower literacy. Barriers and facilitators identified from stakeholders were used to create an implementation process map. CONCLUSIONS: Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its resource limitations, is needed to optimise benefit to patients and clinicians. Assessment of speed and breadth of dissemination and usage will be collected to further evidence the benefit of embedding implementation science methods from the outset to translate research findings into clinical practice.

Developing an AI Tool to Derive Social Determinants of Health for Primary Care Patients: Qualitative Findings From a Codesign Workshop.

PURPOSE: Information about social determinants of health (SDOH) is essential for primary care clinicians in the delivery of equitable, comprehensive care, as well as for program planning and resource allocation. SDOH are rarely captured consistently in clinical settings, however. Artificial intelligence (AI) could potentially fill these data gaps, but it needs to be designed collaboratively and thoughtfully. We report on a codesign process with primary care clinicians to understand how an AI tool could be developed, implemented, and used in practice. METHODS: We conducted semistructured, 50-minute workshops with a large urban family health team in Toronto, Ontario, Canada asking their feedback on a proposed AI-based tool used to derive patient SDOH from electronic health record data. An inductive thematic analysis was used to describe participants' perspectives regarding the implementation and use of the proposed tool. RESULTS: Fifteen participants contributed across 4 workshops. Most patient SDOH information was not available or was difficult to find in their electronic health record. Discussions focused on 3 areas related to the implementation and use of an AI tool to derive social data: people, process, and technology. Participants recommended starting with 1 or 2 social determinants (income and housing were suggested as priorities) and emphasized the need for adequate resources, staff, and training materials. They noted many challenges, including how to discuss the use of AI with patients and how to confirm their social needs identified by the AI tool. CONCLUSIONS: Our codesign experience provides guidance from end users on the appropriate and meaningful design and implementation of an AI-based tool for social data in primary care.

Enhancing the provision of cancer nutrition information to support care through experience-based co-design: a mixed-methods study.

PURPOSE: Nutrition is essential within cancer care, yet patient and carer access to nutrition care and information is variable. This study aimed to (1) investigate patient and carer access and perceptions, and health professional views and practices, relating to cancer nutrition information and care; and (2) co-design interactive resources to support optimal nutrition care. METHODS: Patients and carers completed a survey regarding access to nutrition care and information. Seven multidisciplinary health service teams were invited to participate in a survey and focus group to assess barriers and enablers in nutrition practices. Focus groups were recorded, transcribed and thematically analyzed. Eligible patients, carers, and health professionals were invited to four virtual workshops utilizing experience-based co-design methods to identify nutrition priority areas and design resources. Workshop participant acceptability of the resources was measured. RESULTS: Of 104 consumer survey respondents (n = 97 patients, n = 7 carers), 61% agreed that it "took too much time to find evidence-based nutrition and cancer information", and 46% had seen a dietitian. Thirty-four of 38 health professionals completed the survey and 30 participated in a focus group, and it was identified the greatest barriers to delivering nutrition care were lack of referral services, knowledge or skill gaps, and time. Twenty participants (n = 10 patients and carers, n = 10 health professionals) attended four workshops and co-designed a suite of 46 novel resources rated as highly acceptable. CONCLUSION: Improved communication, training, and availability of suitable resources could improve access to and support cancer nutrition information and care. New, co-designed cancer nutrition resources were created and deemed highly acceptable to patients, carers, and health professionals.

Psychological Care for People with Inflammatory Bowel Diseases: Exploring Consumers' Perspectives to Inform Future Service Co-design.

BACKGROUND: There is a need to improve psychological care for people with Inflammatory Bowel Diseases (IBD), noting the high psychosocial burden of disease. AIMS: This study qualitatively explored the views of people living with IBD to help inform future co-design of services that better meet the psychological needs of consumers. METHODS: Adults with IBD were recruited to attend virtual focus groups to discuss what they want most in an IBD-specific psychological service. The discussions were recorded and transcribed, and data were analyzed using conventional qualitative content analysis. Draft results were summarized midway and reviewed by remaining focus groups and a final expert consumer. A quantitative dataset was created of comment frequencies. RESULTS: Thirty-one participants took part in the study: 10 focus groups were held with an average of three participants per group. The analysis identified 254 codes, 38 sub-categories and six categories. Five main categories were identified for an IBD-specific psychological service: People-Centered Healthcare (commented on by 90% of participants), Education and Preparation (83%), Social Connection (83%), Psychological Input (93%), and Accessible Services (97%). Results were summarized in a set of proposed clinical guidelines. CONCLUSIONS: The findings of this study identify important insights from people living with IBD regarding priorities for psychological services. IBD services should focus on improving education, addressing social connection, and integrating psychological input, as well as becoming more people-centered and accessible. It is hoped that IBD services consult the proposed clinical guidelines to inform co-designed service improvements.

Using a multi-stakeholder co-design process to develop a health service organisation-wide patient reported outcome measure collection system.

PURPOSE: Limited examples exist of successful Patient Reported Outcome Measure (PROM) implementation across an entire healthcare organisation. The aim of this study was to use a multi-stakeholder co-design process to develop a PROM collection system, which will inform implementation of routine collection of PROMs across an entire healthcare organisation. METHODS: Co-design comprised semi-structured interviews with clinicians (n = 11) and workshops/surveys with consumers (n = 320). The interview guide with clinicians focused on their experience using PROMs, preferences for using PROMs, and facilitators/barriers to using PROMs. Co-design activities specific to consumers focused on: (1) how PROMs will be administered (mode), (2) when PROMs will be administered (timing), (3) who will assist with PROMs collection, and (4) how long a PROM will take to complete. Data were analysed using a manifest qualitative content analysis approach. RESULTS: Core elements identified during the co-design process included: PROMs collection should be consumer-led and administered by someone other than a clinician; collection at discharge from the healthcare organisation and at 3-6 months post discharge would be most suitable for supporting comprehensive assessment; PROMs should be administered using a variety of modes to accommodate the diversity of consumer preferences, with electronic as the default; and the time taken to complete PROMs should be no longer than 5-10 min. CONCLUSION: This study provides new information on the co-design of a healthcare organisation-wide PROM collection system. Implementing a clinician and patient informed strategy for PROMs collection, that meets their preferences across multiple domains, should address known barriers to routine collection.

An online evidence-based dictionary of common adverse events of antidepressants: a new tool to empower patients and clinicians in their shared decision-making process.

BACKGROUND: Adverse events (AEs) are commonly reported in clinical studies using the Medical Dictionary for Regulatory Activities (MedDRA), an international standard for drug safety monitoring. However, the technical language of MedDRA makes it challenging for patients and clinicians to share understanding and therefore to make shared decisions about medical interventions. In this project, people with lived experience of depression and antidepressant treatment worked with clinicians and researchers to co-design an online dictionary of AEs associated with antidepressants, taking into account its ease of use and applicability to real-world settings. METHODS: Through a pre-defined literature search, we identified MedDRA-coded AEs from randomised controlled trials of antidepressants used in the treatment of depression. In collaboration with the McPin Foundation, four co-design workshops with a lived experience advisory panel (LEAP) and one independent focus group (FG) were conducted to produce user-friendly translations of AE terms. Guiding principles for translation were co-designed with McPin/LEAP members and defined before the finalisation of Clinical Codes (CCs, or non-technical terms to represent specific AE concepts). FG results were thematically analysed using the Framework Method. RESULTS: Starting from 522 trials identified by the search, 736 MedDRA-coded AE terms were translated into 187 CCs, which balanced key factors identified as important to the LEAP and FG (namely, breadth, specificity, generalisability, patient-understandability and acceptability). Work with the LEAP showed that a user-friendly language of AEs should aim to mitigate stigma, acknowledge the multiple levels of comprehension in 'lay' language and balance the need for semantic accuracy with user-friendliness. Guided by these principles, an online dictionary of AEs was co-designed and made freely available ( https://thesymptomglossary.com ). The digital tool was perceived by the LEAP and FG as a resource which could feasibly improve antidepressant treatment by facilitating the accurate, meaningful expression of preferences about potential harms through a shared decision-making process. CONCLUSIONS: This dictionary was developed in English around AEs from antidepressants in depression but it can be adapted to different languages and cultural contexts, and can also become a model for other interventions and disorders (i.e., antipsychotics in schizophrenia). Co-designed digital resources may improve the patient experience by helping to deliver personalised information on potential benefits and harms in an evidence-based, preference-sensitive way.

Exploring women's experiences of care during hospital childbirth in rural Tanzania: a qualitative study.

BACKGROUND: Women's childbirth experiences provide a unique understanding of care received in health facilities from their voices as they describe their needs, what they consider good and what should be changed. Quality Improvement interventions in healthcare are often designed without inputs from women as end-users, leading to a lack of consideration for their needs and expectations. Recently, quality improvement interventions that incorporate women's childbirth experiences are thought to result in healthcare services that are more responsive and grounded in the end-user's needs. AIM: This study aimed to explore women's childbirth experiences to inform a co-designed quality improvement intervention in Southern Tanzania. METHODS: This exploratory qualitative study used semi-structured interviews with women after childbirth (n = 25) in two hospitals in Southern Tanzania. Reflexive thematic analysis was applied using the World Health Organization's Quality of Care framework on experiences of care domains. RESULTS: Three themes emerged from the data: (1) Women's experiences of communication with providers varied (2) Respect and dignity during intrapartum care is not guaranteed; (3) Women had varying experience of support during labour. Verbal mistreatment and threatening language for adverse birthing outcomes were common. Women appreciated physical or emotional support through human interaction. Some women would have wished for more support, but most accepted the current practices as they were. CONCLUSION: The experiences of care described by women during childbirth varied from one woman to the other. Expectations towards empathic care seemed low, and the little interaction women had during labour and birth was therefore often appreciated and mistreatment normalized. Potential co-designed interventions should include strategies to (i) empower women to voice their needs during childbirth and (ii) support healthcare providers to have competencies to be more responsive to women's needs.

'It is human work': qualitatively exploring community roles that facilitate cultural food security for people from refugee backgrounds.

OBJECTIVES: Cultural food security is crucial for cultural health and, for people from refugee backgrounds, supports the settlement journey. Cultural communities are vital in facilitating access to cultural foods; however, it is not understood how refugee-background communities sustain cultural food security in the Australian context. This study aimed to explore key roles in refugee-background communities to understand why they were important and how they facilitate cultural food security. DESIGN: Interviews were conducted by community researchers, and data analysis was undertaken using best-practice framework for collaborative data analysis. SETTING: Greater Brisbane, Australia. PARTICIPANTS: Six interviews were conducted between August and December 2022 with people from a refugee-background community, lived in Greater Brisbane and who fulfilled a key food role in the community that facilitated access to cultural foods. RESULTS: Fostering improved cultural food security supported settlement by creating connections across geographical locations and cultures and generated a sense of belonging that supported the settlement journey. Communities utilised communication methods that prioritised the knowledge, wisdom and experience of community members. It also provided community members with influence over their foodways. Community leaders had an ethos that reflected collectivist values, where community needs were important for their own health and well-being. CONCLUSIONS: Communities are inherently structured and communicate in a way that allows collective agency over foodways. This agency promotes cultural food security and is suggestive of increased food sovereignty. Researchers and public health workers should work with communities and recognise community strengths. Food security interventions should target cultural food security and autonomy.

A qualitative evaluation of a co-design process involving young people at risk of suicide.

BACKGROUND: Co-design is becoming common practice in the development of mental health services, however, little is known about the experience of such practices, particularly when young people are involved. OBJECTIVE: The aim of this study was to conduct a process evaluation of the co-design which was undertaken for the development of an intervention for youth and adolescents at risk of suicide. This paper briefly outlines the co-design process undertaken during a COVID-19 lockdown and then focuses on a qualitative evaluation of the experience of taking part in a co-design process. SETTING AND PARTICIPANTS: The evaluation involved young consumers of a public youth mental health service, their carers/parents and service delivery staff who had taken part in the co-design process. METHOD: This study used follow-up semistructured interviews with the co-design participants to explore their experience of the co-design process. Inductive thematic analysis was used to draw out common themes from the qualitative data. RESULTS: It was found that despite the practical efforts of the project team to minimise known issues in co-design, challenges centred around perceptions regarding power imbalance, the need for extensive consultation and time constraints still arose. DISCUSSION: Despite these challenges, the study found that the co-design provided a human-centred, accessible and rewarding process for young people, parents and staff members, leaving them with the feeling that they had made a worthwhile contribution to the design of the new service, as well as contributing to changing practice in service design. CONCLUSION: With sensitivity and adaptation to usual practice, it is possible to include young people with suicidal ideation, their parents/carers and professional staff in a safe and effective co-design process. PATIENT AND PUBLIC CONTRIBUTION: The authors would like to thank and acknowledge the young people with a lived experience and their carers who participated in the co-design process and research evaluation component of this study. We also wish to thank the clinical staff, peer workers and family peer workers who participated in this research.

A Qualitative Study of National Perspectives on Advancing Social Prescribing Using Co-Design in Canada.

INTRODUCTION: Social prescribing offers a formal pathway of connecting patients in the health system with sources of support within the community to help improve their health and well-being. Since its launch in March 2022, the Canadian Institute for Social Prescribing has acted as a collective impact network to identify, connect and build upon established social prescribing initiatives using a co-design methodology. The institute received input from a participant advisory council, co-design partners and several communities of interest groups. This study aimed to describe the perceptions of the Canadian Institute for Social Prescribing's role in advancing social prescribing using a co-design approach and the barriers and facilitators to implementing social prescribing in Canada. METHODS: We used a qualitative descriptive study design, document analysis, participant observation and semi-structured individual interviews (n = 7) with members of the Canadian Institute for Social Prescribing co-design group and the institute's leadership. We also analysed documents, field notes and transcripts using codebook thematic analysis. RESULTS: Four themes were developed representing the facilitators of implementing the Canadian Institute for Social Prescribing to support social prescribing: Creating relational mechanisms (i.e., partnerships and connections), Bringing awareness to social prescribing and contributing to the evidence (i.e., values and beliefs), Addressing systemic conditions (i.e., having a common language for social prescribing and organizing the community health sector) and Enabling funding and policy to drive social prescribing initiatives (i.e., shifting evidence into policy and securing sustainable funding). CONCLUSION: Participants' reflections on the co-design process demonstrated that the Canadian Institute for Social Prescribing development provided networking opportunities and shared resources relevant to social prescribing. Co-design efforts also fostered relational and informational support, which laid the necessary groundwork in Canada to overcome the complex interplay between the macro- and micro-level settings in which social prescribing is practiced. PATIENT OR PUBLIC CONTRIBUTION: The interviews and observations involved participants with lived experience of delivering, receiving or advocating for social prescribing.

Patient and public involvement and engagement with underserved communities in dementia research: Reporting on a partnership to co-design a website for postdiagnostic dementia support.

INTRODUCTION: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis. METHODS: The PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion. RESULTS: To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. CONCLUSION: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society. PATIENT OR PUBLIC CONTRIBUTION: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.

Are codesigned programmes more difficult to implement? A qualitative study of staff perceptions on the implementation of a new youth mental health programme.

BACKGROUND: Codesigned interventions are becoming more common in health services and, in particular, in the design and development of mental health programmes and interventions. However, previous research has established that the transition from codesign to implementation can experience several challenges and that this transition process has received little research attention. OBJECTIVE: The aim of this study was to explore the experience of staff members charged with the implementation of a codesigned intervention for young people and adolescents at risk of suicide. SETTING AND PARTICIPANTS: Five staff members involved in the implementation of the new codesigned programme took part in semi-structured interviews. METHOD: The study involved qualitative evaluation of staff experiences during the implementation of a new child and youth suicide intervention. Interviews were analysed using reflexive thematic analysis. RESULTS: The analysis identified four themes of 'disconnect', 'operational challenges, 'service user' and 'being authentic'. 'Disconnect' captures the difficulties of implementing a codesigned programme which leads to 'operational challenges' in meeting broader expectations while ensuring the feasibility of the programme. The third theme, 'service user', captures the realisation that the young people accessing the new service were different to those involved in the codesign process. The final theme, 'being authentic', highlights how staff needed to be responsive and flexible while remaining true to the principles proposed in the codesign. DISCUSSION: This study yielded some valuable insights into the challenges around the implementation of a codesigned intervention, an under-researched area. The findings suggest that adaption of the design may be necessary, if it is not informed by implementation constraints, making it necessary for the implementation team to be well-briefed on the initial design and given plenty of time to make the necessary adjustments in a coproduction process. Limitations for the generalisation of the results include a small sample of staff and particular challenges that may be unique to this study. CONCLUSION: The present study highlights that for health services undertaking codesign approaches, appropriate time and resources need to be considered for the implementation phase of an initiative, to ensure that there is effective translation from design to implementation and that new codesigned services can be effective within operational constraints. PATIENT AND PUBLIC CONTRIBUTION: The authors would like to thank and acknowledge the young people with a lived-experience and their carers who participated in the codesign process and research evaluation component of this study. We also wish to thank the clinical staff, peer workers and family peer workers who participated in the evaluation.

Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.

INTRODUCTION: Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners. METHODS: A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model. RESULTS: Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. CONCLUSIONS: The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work.

Reflections on the opportunities and challenges of applying experience-based co-design (EBCD) to phase 1 clinical trials in oncology.

BACKGROUND: Experience-Based Co-Design (EBCD) is a multi-stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches, particularly co-design, in the specific context of early-phase clinical trials. METHODS: We reflect on the opportunities and challenges of applying EBCD in a new context of early-phase clinical trials in oncology where experimental treatments are increasingly perceived as a therapeutic option and, in certain instances, their efficacy may lead to accelerated approval facilitating a swifter integration into standard care. RESULTS: We propose that the opportunity of applying EBCD in such trials lies in improving the delivery of person-centered care, care coordination, and support during the transition from experimental to standard care. Three potential challenges when applying EBCD in early-phase clinical trials are discussed related to: the need for standardization in trial processes; planning EBCD in a context of high uncertainty; and vulnerability of patient populations. CONCLUSION: Integrating EBCD into early-phase oncology trials presents an opportunity to enhance person-centered care and can lead to simultaneous improvements in care processes and therapeutic development. PATIENT OR PUBLIC CONTRIBUTION: This article has been developed with the collaboration of a patient partner who serves on the advisory board of our ongoing EBCD study in early clinical trials.

Partnered Recruitment: Engaging Individuals With Lived Experience in the Recruitment of Co-Design Participants.

BACKGROUND: Young adults with type 1 diabetes (T1D) face complex health challenges, including a heightened risk for distress. To counter this distress, there is a need to develop accessible, acceptable comprehensive care solutions that integrate diabetes and mental health care to enhance self-efficacy and counter mental health challenges in this population. OBJECTIVE: To describe the engagement of individuals with lived experience of T1D and mental health challenges in the development of a recruitment strategy to support the co-design of an innovative integrated care programme. RESULTS: Seven individuals with lived experience formed a Partner Advisory Council (PAC) to recruit young adults (18-29 years old) living with T1D, their friends or family and health researchers and professionals in co-design interviews (n = 19) and co-design events (n = 12). The PAC played a key role in developing a comprehensive recruitment strategy, overcoming traditional barriers and stigmas in the design of an integrated model of care. CONCLUSION: Assuming the presence of mental health challenges in young adults living with T1D during recruitment had far-reaching impacts on the development of a whole-person and integrated diabetes and mental health care solution. The efficient recruitment of this sample provided invaluable insights into the nuanced challenges experienced by young adults with T1D, the individual skills developed in response to their mental health challenges and the ways that this understanding can shape future programming to support mental health, quality of life and well-being. The ongoing involvement of the PAC as co-researchers underscores the enduring impact of patient engagement in developing integrated care solutions. PATIENT OR PUBLIC CONTRIBUTION: The co-design of the TECC-T1D3 model was enriched by the invaluable contributions of individuals with lived experience. This included the engagement of a diverse PAC in the recruitment of participants in co-design interviews and co-design events. PAC members actively participated in research decision-making with their insights informing a robust recruitment strategy. Beyond recruitment, PAC members continue to serve as co-researchers, shaping ongoing research and actively contributing to the TECC-T1D3 project. Six PAC members are co-authors on this manuscript.

The process of co-designing a model of social prescribing: An Australian case study.

INTRODUCTION: Social needs such as housing, employment, food, income and social isolation are having a significant impact on individuals, families and communities. Individuals are increasingly presenting to health settings with social needs, which are ill-equipped to address nonmedical needs. Social prescribing is a systematic approach connecting the health, social and community sectors to better address social needs and improve health and wellbeing. Social prescribing interventions are being implemented world-wide. With variability in health and social care systems internationally, it is important that social prescribing interventions are co-designed with key stakeholders to ensure they can be implemented and sustained within local systems. METHODS: This Australian case study provides a detailed description of the process undertaken to co-design a social prescribing service model in a regional area. Four co-design workshops were undertaken, two with health and social care professionals and two with community members. The project followed an iterative process of resourcing, planning, recruiting, sensitising, facilitation, reflection and building for change across the workshops. RESULTS: Through this process, key stakeholders were able to successfully co-design a social prescribing model of care for the region. CONCLUSION: By demonstrating the process and materials used in our project, we aim to open the 'black box' of co-design for social prescribing and provide ideas and resources for others to adapt and utilise. PATIENT OR PUBLIC CONTRIBUTION: The project was designed and undertaken by a steering committee comprising university-based researchers (authors C. O. and S. B.), local government (author D. A.) and health, social and community services (authors B. G., M. W., J. O. and S. R.). Members of the steering committee participated in project design, participant recruitment, workshop facilitation, data analysis and interpretation.