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.

The power of arts-based film interventions to encourage Black blood donors.

BACKGROUND: Blood services must consider innovative ways to encourage more Black people to donate to enhance the efficacy of treatments. We evaluate how two innovative arts-based approaches (co-designed and locally produced films and a large-scale Marvel Studios'/NHSBT collaboration) can achieve this by generalizing to a wider audience from their target audiences. STUDY DESIGN AND METHODS: Four co-designed short community films were produced in the United Kingdom: Comedy, Reciprocity, Donor-Recipient, and Sliding Doors. In Study 1 (N = 44: Black people), these films were evaluated in the target community in which they were produced. In Study 2 (N = 1237: Black = 638, White = 599), the community and Marvel Black Panther/NHSBT films were evaluated in a nontarget general population sample. Evaluations were in terms of campaign behavioral efficacy (e.g., willingness to donate, encourage others to donate) and affect. These analyses were segmented by donor status, age, and gender. RESULTS: Study 1 shows that the community groups rated the films very positively, with over 90% stating that they would be convinced to donate blood. Study 2 shows the results from the community films generalized to the general population, with the Black Panther film also rated positively in the general population. Three community films and the Black Panther film were rated equally positively. There were notable differences across generations and by donor status. DISCUSSION: The results highlight the power of arts-based approaches (both locally co-produced community films and franchise collaborations) in encouraging donors within their target audiences and, importantly, on the broader 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.

Co-designing a vaping cessation program for Australian young adults: A conceptual model.

INTRODUCTION: Australian young adults (YA) report difficulties in quitting vaping. This study sought to understand what a vaping cessation program should look like from the perspective of current and former vapers, and professionals/experts involved in this health space, to inform the development of a conceptual model. METHODS: Data collection was informed by Social Cognitive Theory using co-design methodology to explore vaping cessation. Interactive workshops and semi-structured interviews were held online between March 2023-January 2024, with data from participants' narratives and written materials thematically analysed. RESULTS: YAs (18-24 years) identifying as current or former vapers (n=15) and health professionals/experts'(n=13) insights informed the model framework, incorporating three main elements based on environmental, personal and behavioural factors shaping vaping cessation. Four design considerations were identified; the program needs to be affordable, accessible, appropriate and adaptable. YAs expressed a strong preference to share their quitting journey with peers, endorsing a digital forum providing a hybrid framework of support. CONCLUSIONS: Vaping cessation is nuanced and complex requiring a multi-faceted approach targeted to the specific needs of the young adult population. IMPLICATIONS: The findings can be used to inform the development of a vaping cessation program tailored to young adults in Australia and other similar contexts. Young adults perceived sharing the quitting journey and being inspired by the lived experience of others as critical components for successful vaping cessation. Social Cognitive Theory is demonstrated to be a valuable behaviour change framework for understanding vaping cessation and should be considered in future research of intervention development.

Exploring patients and caregivers needs and experiences in oncological physiotherapy: a call for collaborative care.

PURPOSE: This study explores whether the full potential of physiotherapy is reaching cancer patients and their caregivers at all stages of the oncological process, aiming to identify gaps and opportunities for improving care. METHODS: The World Cafe co-design methodology facilitated discussions among cancer patients and caregivers. This dynamic, inclusive, and engaging approach fostered diverse perspectives and deeper insights through collaborative and flexible discussions. Sessions were recorded, transcribed, and qualitatively analyzed. RESULTS: Sixteen participants were involved (eight cancer survivors and eight caregivers). The mean age of cancer survivors was 63.8 years, while the average age of caregivers was 59.3 years. Breast cancer was the most prevalent diagnosis among patients, and most caregivers had lost their family members to cancer. Analysis revealed two primary themes: "feeling cared for" and "the role of physiotherapy in the oncological process." Key findings highlight the need for more humanized healthcare, with professionals providing support through effective communication and empathy. Significant gaps were detected in both systematic referrals to physiotherapists and their integration into care teams. Testimonies highlighted the lack of knowledge about the full potential of physiotherapy in oncology, hindering access. There was also a demand for recognizing specialized oncological physiotherapists. CONCLUSIONS: These findings highlight significant gaps in physiotherapy care for cancer survivors and caregivers, including unmet needs due to the lack of information, resources, and effective communication. Future efforts should focus on increasing the visibility of physiotherapy, integrating specialized physiotherapists into oncology teams, and enhancing the emotional education of healthcare professionals to provide more humanized 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.

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.

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.

Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.

BACKGROUND: Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co-designing resources to support older people with intellectual disabilities and their families to plan for the future. METHODS: Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience-based co-design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co-design workshops and a user feedback phase. RESULTS: The co-design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co-design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. CONCLUSION: The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co-design approach was key to ensuring that the resources were useful and accessible for families. PATIENT OR PUBLIC CONTRIBUTION: People with intellectual disabilities and their families contributed to the design of the resources through the co-design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co-facilitated co-design workshops and co-authored this article.

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.

Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

BACKGROUND: People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes-the EMBED-Care Framework. METHODS: A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. RESULTS: The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. CONCLUSIONS: This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. PATIENT OR PUBLIC CONTRIBUTION: We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

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.

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.