Exploring the impact of user involvement on health and social care services for cancer in the UK.

This report presents the findings from a study of cancer network partnership groups in the UK. Cancer network partnership groups are regional organisations set up to enable joint working between people affected by cancer and health professionals, with the aim of improving cancer care

Co-production in practice : how people with assisted living needs can help design and evolve technologies and services

Background The low uptake of telecare and telehealth services by older people may be explained by the limited involvement of users in the design. If the ambition of ‘care closer to home’ is to be realised, then industry, health and social care providers must evolve ways to work with older people to co-produce useful and useable solutions. Method We conducted 10 co-design workshops with users of telehealth and telecare, their carers, service providers and technology suppliers. Using vignettes developed from in-depth ethnographic case studies, we explored participants’ perspectives on the design features of technologies and services to enable and facilitate the co-production of new care solutions. Workshop discussions were audio recorded, transcribed and analysed thematically. Results Analysis revealed four main themes. First, there is a need to raise awareness and provide information to potential users of assisted living technologies (ALTs). Second, technologies must be highly customisable and adaptable to accommodate the multiple and changing needs of different users. Third, the service must align closely with the individual’s wider social support network. Finally, the service must support a high degree of information sharing and coordination. Conclusions The case vignettes within inclusive and democratic co-design workshops provided a powerful means for ALT users and their carers to contribute, along with other stakeholders, to technology and service design. The workshops identified a need to focus attention on supporting the social processes that facilitate the collective efforts of formal and informal care networks in ALT delivery and use

What matters to older people with assisted living needs? A phenomenological analysis of the use and non-use of telehealth and telecare

Telehealth and telecare research has been dominated by efficacy trials. The field lacks a sophisticated theorisation of [a] what matters to older people with assisted living needs; [b] how illness affects people's capacity to use technologies; and [c] the materiality of assistive technologies. We sought to develop a phenomenologically and socio-materially informed theoretical model of assistive technology use. Forty people aged 60–98 (recruited via NHS, social care and third sector) were visited at home several times in 2011–13. Using ethnographic methods, we built a detailed picture of participants' lives, illness experiences and use (or non-use) of technologies. Data were analysed phenomenologically, drawing on the work of Heidegger, and contextualised using a structuration approach with reference to Bourdieu's notions of habitus and field. We found that participants' needs were diverse and unique. Each had multiple, mutually reinforcing impairments (e.g. tremor and visual loss and stiff hands) that were steadily worsening, culturally framed and bound up with the prospect of decline and death. They managed these conditions subjectively and experientially, appropriating or adapting technologies so as to enhance their capacity to sense and act on their world. Installed assistive technologies met few participants' needs; some devices had been abandoned and a few deliberately disabled. Successful technology arrangements were often characterised by ‘bricolage’ (pragmatic customisation, combining new with legacy devices) by the participant or someone who knew and cared about them. With few exceptions, the current generation of so-called ‘assisted living technologies’ does not assist people to live with illness. To overcome this irony, technology providers need to move beyond the goal of representing technology users informationally (e.g. as biometric data) to providing flexible components from which individuals and their carers can ‘think with things’ to improve the situated, lived experience of multi-morbidity. A radical revision of assistive technology design policy may be needed

Analysing the role of complexity in explaining the fortunes of technology programmes : Empirical application of the NASSS framework

© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Background: Failures and partial successes are common in technology-supported innovation programmes in health and social care. Complexity theory can help explain why. Phenomena may be simple (straightforward, predictable, few components), complicated (multiple interacting components or issues) or complex (dynamic, unpredictable, not easily disaggregated into constituent components). The recently published NASSS framework applies this taxonomy to explain Non-adoption or Abandonment of technology by individuals and difficulties achieving Scale-up, Spread and Sustainability. This paper reports the first empirical application of the NASSS framework. Methods: Six technology-supported programmes were studied using ethnography and action research for up to 3 years across 20 health and care organisations and 10 national-level bodies. They comprised video outpatient consultations, GPS tracking technology for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organising software and integrated case management via data warehousing. Data were collected at three levels: micro (individual technology users), meso (organisational processes and systems) and macro (national policy and wider context). Data analysis and synthesis were guided by socio-technical theories and organised around the seven NASSS domains: (1) the condition or illness, (2) the technology, (3) the value proposition, (4) the adopter system (professional staff, patients and lay carers), (5) the organisation(s), (6) the wider (institutional and societal) system and (7) interaction and mutual adaptation among all these domains over time. Results: The study generated more than 400 h of ethnographic observation, 165 semi-structured interviews and 200 documents. The six case studies raised multiple challenges across all seven domains. Complexity was a common feature of all programmes. In particular, individuals' health and care needs were often complex and hence unpredictable and 'off algorithm'. Programmes in which multiple domains were complicated proved difficult, slow and expensive to implement. Those in which multiple domains were complex did not become mainstreamed (or, if mainstreamed, did not deliver key intended outputs). Conclusion: The NASSS framework helped explain the successes, failures and changing fortunes of this diverse sample of technology-supported programmes. Since failure is often linked to complexity across multiple NASSS domains, further research should systematically address ways to reduce complexity and/or manage programme implementation to take account of it.Peer reviewedFinal Published versio

Designing assisted living technologies 'in the wild' : preliminary experiences with cultural probe methodology

Background There is growing interest in assisted living technologies to support independence at home. Such technologies should ideally be designed ‘in the wild’ i.e. taking account of how real people live in real homes and communities. The ATHENE (Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography) project seeks to illuminate the living needs of older people and facilitate the co-production with older people of technologies and services. This paper describes the development of a cultural probe tool produced as part of the ATHENE project and how it was used to support home visit interviews with elders with a range of ethnic and social backgrounds, family circumstances, health conditions and assisted living needs. Method Thirty one people aged 60 to 98 were visited in their homes on three occasions. Following an initial interview, participants were given a set of cultural probe materials, including a digital camera and the ‘Home and Life Scrapbook’ to complete in their own time for one week. Activities within the Home and Life Scrapbook included maps (indicating their relationships to people, places and objects), lists (e.g. likes, dislikes, things they were concerned about, things they were comfortable with), wishes (things they wanted to change or improve), body outline (indicating symptoms or impairments), home plan (room layouts of their homes to indicate spaces and objects used) and a diary. After one week, the researcher and participant reviewed any digital photos taken and the content of the Home and Life Scrapbook as part of the home visit interview. Findings The cultural probe facilitated collection of visual, narrative and material data by older people, and appeared to generate high levels of engagement from some participants. However, others used the probe minimally or not at all for various reasons including limited literacy, physical problems (e.g. holding a pen), lack of time or energy, limited emotional or psychological resources, life events, and acute illness. Discussions between researchers and participants about the materials collected (and sometimes about what had prevented them completing the tasks) helped elicit further information relevant to assisted living technology design. The probe materials were particularly helpful when having conversations with non-English speaking participants through an interpreter. Conclusions Cultural probe methods can help build a rich picture of the lives and experiences of older people to facilitate the co-production of assisted living technologies. But their application may be constrained by the participant’s physical, mental and emotional capacity. They are most effective when used as a tool to facilitate communication and development of a deeper understanding of older people’s needs

Diabetes self-management arrangements in Europe: a realist review to facilitate a project implemented in six countries

Background: Self-management of long term conditions can promote quality of life whilst delivering benefits to the financing of health care systems. However, rarely are the meso-level influences, likely to be of direct relevance to these desired outcomes, systematically explored. No specific international guidelines exist suggesting the features of the most appropriate structure and organisation of health care systems within which to situate self-management approaches and practices. This review aimed to identify the quantitative literature with regard to diabetes self-management arrangements currently in place within the health care systems of six countries (The United Kingdom, The Netherlands, Norway, Spain, Bulgaria, and Greece) and explore how these are integrated into the broader health care and welfare systems in each country. Methods: The methodology for a realist review was followed. Publications of interest dating from 2000 to 2013 were identified through appropriate MeSH terms by a systematic search in six bibliographic databases. A search diary was maintained and the studies were assessed for their quality and risk of bias. Results: Following the multi-step search strategy, 56 studies were included in the final review (the majority from the UK) reporting design methods and findings on 21 interventions and programmes for diabetes and chronic disease self-management. Most (11/21, 52%) of the interventions were designed to fit within the context of primary care. The majority (11/21, 52%) highlighted behavioural change as an important goal. Finally, some (5/21, 24%) referred explicitly to Internet-based tools. Conclusions: This review is based on results which are derived from a total of at least 5,500 individuals residing in the six participating countries. It indicates a policy shift towards patient-centred self-management of diabetes in a primary care context. The professional role of diabetes specialist nurses, the need for multidisciplinary approaches and a focus on patient education emerge as fundamental principles in the design of relevant programmes. Socio-economic circumstances are relevant to the capacity to self-manage and suggest that any gains and progress will be hard to maintain during economic austerity. This realist review should be interpreted within the wider context of a whole systems approach regarding self-care support and chronic illness management

The day-to-day co-production of ageing in place

We report findings from a study that set out to explore the experience of older people living with assisted living technologies and care services. We find that successful ‘ageing in place’ is socially and collaboratively accomplished – ‘co-produced’ – day-to-day by the efforts of older people, and their formal and informal networks of carers (e.g. family, friends, neighbours). First, we reveal how ‘bricolage’ allows care recipients and family members to customise assisted living technologies to individual needs. We argue that making customisation easier through better design must be part of making assisted living technologies ‘work’. Second, we draw attention to the importance of formal and informal carers establishing and maintaining mutual awareness of the older person’s circumstances day-to-day so they can act in a concerted and coordinated way when problems arise. Unfortunately, neither the design of most current assisted living technologies, nor the ways care services are typically configured, acknowledges these realities of ageing in place. We conclude that rather than more ‘advanced’ technologies, the success of ageing in place programmes will depend on effortful alignments in the technical, organisational and social configuration of support