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.

Defining research priorities for youth public mental health: reflections on a coproduction approach to transdisciplinary working.

BACKGROUND: With most mental health problems established during childhood/adolescence, young people must be a key focus of public mental health approaches. Despite the range of factors known to influence mental health, evidence for effective interventions is lacking for this age group. This study aimed to define priorities for future public health intervention-focused research to support youth mental health by engaging with transdisciplinary stakeholder groups. METHODS: Our coproduction approach involved priority-setting workshops with young people, researchers, practitioners and policy-makers. Each workshop focused on three thematic areas: social connections and relationships; schools and other education settings; and key groups at greater risk of mental ill-health, specifically LGBTQ+ and care-experienced young people. Workshop outputs were synthesized to define research priorities. RESULTS: This paper presents the research priorities that were defined through the priority-setting workshops, and our reflections on the coproduction approach to guide future similar activities undertaken by others. Ten priorities for youth public mental health research were defined, covering the following areas: building supportive relationships; whole system approaches; social media; support at times of transition; improving links between different services; development and training for those who support young people; staff mental health; engaging with families; awareness of and access to services; and out-of-school and community settings. CONCLUSIONS: These research priorities can inform future intervention development to support youth public mental health. Our transdisciplinary approach means the identified research priorities are likely to be relevant to young people's experiences and needs, and to fit with the needs of those working in practice and policy to support young people.

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.

Introducing Care 4.0: An Integrated Care Paradigm Built on Industry 4.0 Capabilities.

Western developed health and care policy is shifting from a patriarchal medical model to a co-managed and integrated approach. Meanwhile, the fourth industrial revolution (Industry 4.0) is transforming manufacturing in line with the digital consumer revolution. Digital health and care initiatives are beginning to use some of the same capabilities to optimize healthcare provision. However, this is usually limited to self-management as part of an organization-centric delivery model. True co-management and integration with other organizations and people is difficult because it requires formal care organizations to share control and extend trust. Through a co-design lens, this paper discusses a more person-centered application of Industry 4.0 capabilities for care. It introduces 'Care 4.0', a new paradigm that could change the way people develop digital health and care services, focusing on trusted, integrated networks of organizations, people and technologies. These networks and tools would help people co-manage and use their own assets, in the context of their own care circle and community. It would enable personalized services that are more responsive to care needs and aspirations, offering preventative approaches that ultimately create a more flexible and sustainable set of integrated health and social care services that support meaningful engagement and interactions.

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.

Preassessment clinic interview and patient anxiety.

BACKGROUND: It is widely recognized that patients have increased anxiety before elective surgery, however, previous research investigating the effect of preassessment clinics (PACs) on anxiety levels has been limited specifically to patient information literature or multimedia use, rather than the consultation process itself. The aim was to investigate the effect attendance at PAC had on patients' anxiety levels, associated with their subsequent surgery and anesthetic. MATERIALS AND METHODS: This survey consisted of a cross-sectional, questionnaire-based, quantitative study investigating patients' anxiety levels before and after attendance at the PAC. The questionnaire consisted of a series of statements concerning the surgery and anesthetic and rated using a Likert-type scale. All adult patients who attended an appointment at the PAC were eligible to participate in the study. Those unable to read and understand the questionnaire were excluded. RESULTS: Overall 121 participants were included in the study. Participants felt less anxious about their subsequent surgery and anesthetic following consultation at the PAC (P < 0.001). This was true for both gender subgroups (P < 0.05) Concerns about intraoperative complications generated the most anxiety. Postoperatively, male participants were most anxious about pain and females about nausea and vomiting. Participants also reported high satisfaction rates for the service at the PAC. CONCLUSIONS: This study contributes to a greater understanding of preoperative anxiety and has important implications for PACs. This clinical survey has been able to demonstrate that consultation at the PAC has a statistically significant positive effect on alleviating patients' anxieties in regards to their surgery and anesthetic.

The Prevalence of Online Health Information Seeking Among Patients in Scotland: A Cross-Sectional Exploratory Study.

BACKGROUND: Online health information seeking is an activity that needs to be explored in Scotland. While there are a growing number of studies that adopt a qualitative approach to this issue and attempt to understand the behaviors associated with online health information seeking, previous studies focusing on quantifying the prevalence and pattern of online health seeking in the United Kingdom have been based on Internet users in general. OBJECTIVE: This exploratory study sought to describe the prevalence of online health information seeking in a rural area of Scotland based on primary data from a patient population. METHODS: A survey design was employed utilizing self-completed questionnaires, based on the Pew Internet and American Life Project; questionnaires were distributed among adult patients in 10 primary care centers in a rural community in Scotland. RESULTS: A convenience sample of 571 (0.10% of the total population in Grampian, N=581,198) patients completed the questionnaire. A total of 68.4% (379/554) of patients had previously used the Internet to acquire health information. A total of 25.4% (136/536) of patients consulted the Internet for health information regarding their current appointment on the day surveyed; 34.6% (47/136) of these patients were influenced to attend their appointment as a result of that online health information. A total of 43.2% (207/479) of patients stated the health information helped improve their health and 67.1% (290/432) indicated that they had learned something new. A total of 34.0% (146/430) of patients talked to a health professional about the information they had found and 90.0% (376/418) reported that the information was useful. In total, 70.4% (145/206) of patients were concerned about obtaining health information online from reliable sources. A total of 67.1% (139/207) of patients were concerned that a health site may sell their personal information, yet only 6.7% (36/535) checked the privacy policy of the site visited. However, 27.9% (55/197) of patients were not concerned about their employer finding out what health sites they visited, whereas 37.5% (78/208) were concerned that others would find out. CONCLUSIONS: The results suggest that online health information-seeking behavior influences offline health-related behavior among the population surveyed. Patient attitudes to online health information seeking were focused on issues relating to trust, reliability, privacy, and confidentiality. This study provides support for the growing phenomenon of an empowered, computer-literate, health information consumer, and the impact of this phenomenon must be considered in the context of the patient-health professional dynamic. The unpredictable nature of human thought and action in relation to this field of study requires an ongoing program of ethnographic research, both physical and virtual, within a Health Web Science framework. This study has provided a baseline of the prevalence of online health information seeking in the Grampian region of Scotland.

Transforming patient experience: health web science meets medicine 2.0.

Until recently, the Western biomedical paradigm has been effective in delivering health care, however this model is not positioned to tackle complex societal challenges or solve the current problems facing health care and delivery. The future of medicine requires a shift to a patient-centric model and in so doing the Internet has a significant role to play. The disciplines of Health Web Science and Medicine 2.0 are pivotal to this approach. This viewpoint paper argues that these disciplines, together with the field of design, can tackle these challenges. Drawing together ideas from design practice and research, complexity theory, and participatory action research we depict design as an approach that is fundamentally social and linked to concepts of person-centered care. We discuss the role of design, specifically co-design, in understanding the social, psychological, and behavioral dimensions of illness and the implications for the design of future care towards transforming the patient experience. This paper builds on the presentations and subsequent interdisciplinary dialogue that developed from the panel session "Transforming Patient Experience: Health Web Science Meets Web 2.0" at the 2013 Medicine 2.0 conference in London.