COVID-19 health information needs of older adults from ethnic minority groups in the UK: a qualitative study.

OBJECTIVE: This study aimed to identify the COVID-19 health information needs of older adults from ethnic minority groups in the UK. STUDY DESIGN: A qualitative study using semistructured interviews. SETTING AND PARTICIPANTS: Indian and Nepalese older adults (≥65 years), their families (≥18 years) and healthcare professionals (HCPs) (≥18 years) engaging with these communities. Participants were recruited between July and December 2020 from Kent, Surrey and Sussex through community organisations. RESULTS: 24 participants took part in the study; 13 older adults, 7 family members and 4 HCPs. Thirteen participants were female, and the majority (n=17) spoke a language other than English at home. Older participants mostly lived in multigenerational households, and family and community were key for providing support and communicating about healthcare needs. Participants' knowledge of COVID-19 varied widely; some spoke confidently about the subject, while others had limited information. Language and illiteracy were key barriers to accessing health information. Participants highlighted the need for information in multiple formats and languages, and discussed the importance of culturally appropriate avenues, such as community centres and religious sites, for information dissemination. CONCLUSION: This study, undertaken during the COVID-19 pandemic, provides insight into how health information can be optimised for ethnic minority older adults in terms of content, format and cultural relevance. The study highlights that health information interventions should recognise the intersection between multigenerational living, family structure, and the health and well-being of older adults, and should promote intergenerational discussion.

Consucrats Have Agency: What Next for the Profecrat? Comment on "The Rise of the Consucrat".

The trend in ensuring adequate consumer representation across diverse activities and sectors, not least in healthcare, has been speedily implemented, sometimes at the expense of strategy. This commentary explores the concept of the consucrat as a consumer representative, presented by de Leeuw, which raised important questions regarding the way in which individuals and health services interact and collaborate. Adopting a complex services marketing lens, the position of the consucrat is discussed in relation to agency underpinning three tensions identified by de Leeuw: designation; professionalization, and; representation. For equality, professional service providers are referred to as 'profecrats.' Supporting de Leeuw, challenges are made to the underlying assumptions implicit in terms used around representation, the perspective that it is the consucrat only who needs to adapt, and the discourse around the competence of the consucrat. We should not be too cautious in our approach to consumer representation. Consucrats have agency - what next for the profecrat?

DEDICATE: proposal for a conceptual framework to develop dementia-friendly integrated eCare support.

BACKGROUND: Evidence shows that the implementation of information and communication technologies (ICT) enabled services supporting integrated dementia care represents an opportunity that faces multi-pronged challenges. First, the provision of dementia support is fragmented and often inappropriate. Second, available ICT solutions in this field do not address the full spectrum of support needs arising across an individual's whole dementia journey. Current solutions fail to harness the potential of available validated e-health services, such as telehealth and telecare, for the purposes of dementia care. Third, there is a lack of understanding of how viable business models in this field can operate. The field comprises both professional and non-professional players that interact and have roles to play in ensuring that useful technologies are developed, implemented and used. METHODS: Starting from a literature review, including relevant pilot projects for ICT-based dementia care, we define the major requirements of a system able to overcome the limitations evidenced in the literature, and how this system should be integrated in the socio-technical ecosystem characterizing this disease. From here, we define the DEDICATE architecture of such a system, and the conceptual framework mapping the architecture over the requirements. RESULTS: We identified three macro-requirements, namely the need to overcome: deficient technology innovation, deficient service process innovation, and deficient business models innovation. The proposed architecture is a three level architecture in which the center (data layer) includes patients' and informal caregivers' preferences, memories, and other personal data relevant to sustain the dementia journey, is connected through a middleware (service layer), which guarantees core IT services and integration, to dedicated applications (application layer) to sustain dementia care (formal support services, FSS), and to existing formal care infrastructures, in order to guarantee care coordination (care coordination services, CCS). CONCLUSIONS: The proposed DEDICATE architecture and framework envisages a feasible means to overcome the present barriers by: (1) developing and integrating technologies that can follow the patient and the caregivers throughout the development of the condition, since the early stages in which the patient is able to build up preferences and memories will be used in the later stages to maximise personalization and thereby improve efficacy and usability (technology innovation); (2) guaranteeing the care coordination between formal and informal caregivers, and giving an active yet supported role to the latter (service innovation); and (3) integrating existing infrastructures and care models to decrease the cost of the overall care pathway, by improving system interoperability (business model innovation).

Social care informatics as an essential part of holistic health care: a call for action.

PURPOSE: The authors identified the need for a cross-disciplinary research view of issues to ensure an integrated citizen-centric support to achieve optimal health of individual citizens and, in particular, the role of informatics to inform and coordinate support towards integrated and holistic care. METHOD: An Exploratory Workshop was approved and sponsored by the European Science Foundation. Twenty-three participants from 15 countries attended, covering a full range of health, social care and informatics professions and disciplines. RESULTS: The participants found strong common ground in identifying key issues to be addressed if citizens with compromised health are to receive integrated and coordinated support to a common set of objectives, while also ensuring appropriate choice and support for citizen, family and other informal carers. At the same time, optimal health was identified as a fundamental human right, and that achieving this is a necessary priority of a caring society. Moreover, Europe has a commitment to researching and developing health informatics (e-health), though not yet giving a priority to this integration of health and social care. Specifically the following main informatics challenges to be addressed were identified: (1) to identify available information and communication needs related to different scenarios of use in the intersection between health and social care, (2) to develop and map shared ontologies, and standards for integration and/or brokerage, (3) to enable planned information access and sharing, shaping a system of trust where the patient is an active partner and policies are established considering all partners/interests, (4) to investigate the use of automatic/intelligent knowledge based and context-relevant services, and (5) empowering the citizen (or their selected agent) as co-producer through modern informatics tools, while carefully avoiding selective disempowerment of the most vulnerable. CONCLUSION: The Exploratory Workshop resulted in a unanimous Declaration for action, which is presented appended to this paper.