EDIFY (Eating Disorders: Delineating Illness and Recovery Trajectories to Inform Personalised Prevention and Early Intervention in Young People): project outline.

EDIFY (Eating Disorders: Delineating Illness and Recovery Trajectories to Inform Personalised Prevention and Early Intervention in Young People) is an ambitious research project aiming to revolutionise how eating disorders are perceived, prevented and treated. Six integrated workstreams will address key questions, including: What are young people's experiences of eating disorders and recovery? What are the unique and shared risk factors in different groups? What helps or hinders recovery? How do the brain and behaviour change from early- to later-stage illness? How can we intervene earlier, quicker and in a more personalised way? This 4-year project, involving over 1000 participants, integrates arts, design and humanities with advanced neurobiological, psychosocial and bioinformatics approaches. Young people with lived experience of eating disorders are at the heart of EDIFY, serving as advisors and co-producers throughout. Ultimately, this work will expand public and professional perceptions of eating disorders, uplift under-represented voices and stimulate much-needed advances in policy and practice.

User Requirements for Comanaged Digital Health and Care: Review.

BACKGROUND: The sustainability of health and social care has led to an imperative to shift the balance of care to communities and support person-centered, integrated, preventive, comanaged, and sustainable care. The digital tool set can support this shift; however, it must extend beyond a clinical focus to include broader personal, social, and environmental needs, experiences, and outcomes. The existing digital health and care design and user requirements literature focuses mainly on specific digital products or design methods. There is little whole-system or whole-of-life consideration, which is crucial to enacting more significant transformations that span different groups and domains. OBJECTIVE: This study aimed to present a set of recurring user requirements and themes for comanaged digital health and care services derived from the body of co-design projects within a digital health and care program. This study aimed to enable people and organizations looking to reorient their approach to health and care research and delivery from a system-led and condition-specific approach to a more person-centric, whole-of-life model. METHODS: Participatory design formed the core methodological approach in underlying the design research, from which user requirements were derived. The process of surfacing requirements involved a selection framework for the identification of eligible projects and a structured review process to consolidate user requirements. RESULTS: This paper presents a set of 14 common user requirements that resulted from a review of co-design projects. The findings demonstrate overlapping and reinforcing sets of needs from citizens and care professionals related to how data are comanaged to improve care and outcomes. This paper discusses the alignment, contrasts, and gaps with broader, comparable literature. It highlights consensus around requirements for personal health storytelling, sharing data on care experiences and how this can support personalized guidance, visualize trends to support decision-making, and generally improve dialog between a citizen and care professionals. These findings identify gaps around how groups and networks of people engage, posing difficult questions for people designing support services as some of the user requirements are not easily met by organizations operating in silos. CONCLUSIONS: This study proposes future recommendations for citizens as active, informed, and consenting partners using new forms of privacy-preserving digital infrastructure that puts the citizen in firm control. It is also recommended that these findings be used by people developing new digital services to ensure that they can start with knowledge of the broader user requirement context. This should inform domain-specific research and development questions and processes. Further work is needed to extend these common requirements to more explicitly consider the trust framework required when citizens comanage their data and care across a broad range of formal and informal actors. Consideration of how authority, delegation, and trust function between members of the public will be critical.

Developing design principles for a Virtual Hospice: improving access to care.

OBJECTIVES: Providing access to hospice services will become increasingly difficult due to the pressures of an ageing population and limited resources. To help address this challenge, a small number of services called Virtual Hospice have been established. This paper presents early-stage design work on a Virtual Hospice to improve access to services provided by a hospice (Highland Hospice) serving a largely remote and rural population in Scotland, UK. METHODS: The study was structured as a series of Experience Labs with Highland Hospice staff, healthcare professionals and patients. Experience Labs employ a participatory design approach where participants are placed at the centre of the design process, helping to ensure that the resultant service meets their needs. Data from the Experience Labs were analysed using qualitative thematic analysis and design analysis. RESULTS: A number of themes and barriers to accessing Highland Hospice services were identified. In response, an initial set of seven design principles was developed. Design principles are high-level guidelines that are used to improve prioritisation and decision making during the design process by ensuring alignment with research insights. The design principles were piloted with a group of stakeholders and gained positive feedback. CONCLUSIONS: The design principles are intended to guide the ongoing development of the Highland Hospice Virtual Hospice. However, the challenges faced by Highland Hospice in delivering services in a largely remote and rural setting are not unique. The design principles, encompassing digital and non-digital guidelines, or the design approach could be applied by other hospices in the UK or overseas.