Prof. Flis Henwood and Dr Mary Darking University of Brighton

Delivering the ‘care’ in ‘telecare’: The case for practice-based evaluation methods and the involvement of users Prof. FlisHenwood and Dr Mary Darking University of Brighton SUI event, Glasgow 30-31st May 2013

Overview • My background and approach.. • Apply this to thinking about telehealth and telecare- implementation and evaluation… • Practice-based evaluation… • Questions…

My background and approach • ‘Social informatics’; social scientist • Focus on information-based technologies, ICTs, digital techs, most latterly in health and social care • Technologies as always, already social • Engage with the dominant discourses that surround the promotion and use of technologies • Research into the ‘lived experience’ of tech use

Challenging some basic assumptions • Technology is not a cure to social problems, despite often being presented as such • Political discourse • Technology as progress and a force for ‘good’ • Technology as empowering for individuals and communities • Management discourse • Technology as increasing efficiency and productivity • Technology as improving resource management

A force for good….a cure? • Policy discourse • ‘..the information revolution will deliver more informed patients, more engaged professionals, more efficient organisations and, ultimately, improved outcomes’ (Liberating the NHS: An information revolution, 2010) • Management discourse • ‘Public sector organisations that do not embrace the technology will continue to have major problems achieving efficiencies and delivering the value demanded by citizens particularly in the light of shrinking public sector budgets’ (McIvor et al, 2002, abstract).

Telehealth as solution • ‘Telehealthsolutions offer a way of delivering tailored care for patients with LTCs, which helps improve QoL and prevent hospital admissions’ (Whole Systems Demonstrator Project- Overview)

but technology is not a ‘cure’… • No straightforward ‘impact’ of technology • Technology and the social are intertwined and mutually shaped • Users and use contexts are central • Technological designs tend to ‘configure’ the user • Technologies seek to control ‘messiness’ that might be central to work being done (e.g. ‘care’) • Resistance to new technologies may reflect real lack of ‘fit’ between technologies and care practices • ‘Appropriation’, ‘articulation work’- making technologies fit- User-centred design, inclusive design, co-design • ‘Sociomaterial’ approaches in STS

An opportunity…. • TH and TC still new, not fully embedded, integrated • If it worked, it wouldn’t be called ‘telecare’, it would be called ‘care’ • Good time to understand what’s happening; get involved…once fully embedded- become invisible • What role for research?

Telecare and telehealth: wider context • Using sensors and ICTs to monitor health and care and, in some cases, to provide care and support self care, remotely • Policy drivers- Ageing population; cost of caring for people with LTCs (the often called ‘burden’ of care) • Industry dominated by suppliers: ‘technology push’? Solutions looking for problems? • Poor understanding of user needs; poor understanding of local social contexts

WSD project • “The Whole System Demonstrator (WSD) programme is a two year research project funded by the Department of Health to find out how technology can help people manage their own health while maintaining their independence”. • England 2008-10. RCT of telehealth and telecare (6191 patients, 238 GP practices across 3 sites- Newham, Kent and Cornwall)

WSD- qualitative findings • 2 studies (Sanders et al 2012; Hendy et al 2012; both BMC Health Services Research) • Sanders et al- identified 3 barriers to participation in trial- • Requirements for tech competence • Threats to identity as independent and able to self care (associated techs with ‘dependence’) • Threats to existing services- satisfaction with existing care relationships

WSD qualitative findings • Hendy et al- explored organisational factors influencing implementation challenges • Managers and practitioners in 3 case study sites • Tension between need for robust evidence in RCT and need for organisational learning across sites • Conclude that implementation of complex innovation such as TH and TC needs it to ‘organically evolve’ be ‘responsive’ and ‘adaptable’ to local H&SC system

Hendy et al (2012) • ‘…the artificiality of randomisation and associated levels of standardisation made a “learn, reflect and adopt” approach very difficult. The RCT protocol was not well enough aligned with generating scalability lessons, iterative and participative modes of learning and developing new levels of service…’ (p8)

What’s already known? TH, TC and ageing population • Research issues: • What assumptions about age and ageing are built into telecare technologies? • How does use of such electronic devices change how older people’s care is given and experienced, or even what is meant by ‘care’ in this context? • How are experiences of dependence and independence changed in context of telecare?

1. Telecareand assumptions about age and ageing • Telecare can reinforce medical models of ageing and detract from progress towards more socially inclusive models of ageing • OP seen as ‘personifications of risk’ (Manthorpe, 2004) • OP’s engagement with telecare as way of ‘making up’ for being ‘burden’ on others (Rogers et al, 2011)

2. Telecareand experiences of ‘care’ • Can replace f2f care and decrease social contact • Re-orders the place of care work and the responsibilities to care • new categories of carers • Downward cascade of care-work responsibilities • new roles for existing carers • Changes how home is experienced • A different kind of care?

A different kind of care? (Oudshoorn, 2009) F2f services Telehealth care services Daily monitoring Protocol-driven communication Control and advice Nurse as surveillant Psych-social care through video Self care as obligation = individualised, immediate care that constitutes heart failure as disease • Intermittent monitoring • Open communication • Medical interventions and advice • Nurse as counsellor • Psycho-social care through dialogue • Self care as option • = contextualised, personalised care that constitutes heart failure as illness

3. Telecare: increased independence? • TC as ‘threat to health’ and independence- monitoring meant they couldn’t get out of the house as much (WSD project) • New and different forms of dependence (on machines) • Surveillance aspect of telecare can reduce independence, mobile devices enable tracking even outside the home (Magnusson and Hanson 2003) • Some forms of dependence are valued- independence can mean isolation

Telehealth/care use- summary • Not always wanted • Not always liked • When used, not always used as intended • Adaptation rather than adoption? • Making technologies fit care needs? • Need for greater involvement of OP/users in design of TC/TH • Need for fit with social and emotional needs as well as medical needs

Practice-based evaluation • Builds on the ‘practice turn’ in social sciences and technology studies more specifically • Developed in context of an evaluation of an EPR system in renal care • Evaluation and implementation can go hand in hand (unlike with WSD RCT approach) • No two evaluations will be alike • Making the technology and care practices fit/complement each other

The Practice Turn • Performativity – a focus on the ‘doing’ or practice of technology-assisted care • Multiplicity (being more than one thing) and including context in our accounts • Bring about the [ontological] question’ ‘What’ are we talking about here? • Frequently, in research design we draw or reify analytical lines that reduce complexity, to produce objects

Pols, 2012 ‘Care at a Distance’ • ‘innovative care practices are characterised by a process of identifying and adjusting goals, because participants are looking for ways of making new technologies work’ . …‘rather than proving the effectivity of predefined variables, it would be wiser to first articulate the various possible effects of using the new technology’ (p. 14)

Participative methods • Aim to facilitate stakeholder problematisation of context-specific issues and concerns • Researcher does not stand outside events but looks to enact a programme of change • Explicit aim to change relations within the research setting through producing capability building effects

What differences did it make? • Engagement itself was thought useful -identified hopes, fears • Identified wider network of care and carers • Identified wider network of ‘users’ of tech • Enabled non-use as well as use • Identified clear areas for ‘sub’ evaluation • Surfaced patient and carer concerns • aided communication; aided peer-to-peer learning • ‘Co-researcher’ programme emerging

Participative… • Organiseevaluation activities around core values and priorities, in our case: patient wellbeing, learning and care • Work collaboratively in groups of 3 or more • Encourage those experiencing or producing EPR-related changes to participate in designing and where possible carrying out evaluation of those changes • Include at least one person in the group who is not directly involved in the change • Look for a range of data sources to triangulate findings (e.g. questionnaire data, system usage data, interviews) • Encourage collective reflection on the boundary of involvement in evaluation (i.e. ‘who’ or ‘what’ is included/excluded) and seek ways to counter persistent exclusion • Report findings in a way(s) that ‘speaks’ to the community of practice concerned

Practice-centred • Organise evaluation around care ‘scenarios’ where change has (or has not) occurred • Actively develop an evaluation ‘watch list’ of areas of practice where it is anticipated changes to practice will occur in order to capture (if) / when those changes occur • Include in this list: change anticipated as part of specific service improvement activities; and/or change relating to functionalities that have been either speculated upon and/or specified in advance • Remain mindful of opportunistic or emergent innovations that may come from hands-on engagement with the technology

Practice-centred (cont.) • Capture ‘before change’ data where possible or relevant • Wait for change to materialise ‘in practice’ before collecting ‘after change’ data • Actively include scenarios where EPR related change has: not proved possible; only partially been achieved; required an unanticipated amount of effort; has proven exceptionally slow to achieve; or has proven unachievable

Questions • How important is the wider political-economic landscape of telecare (the drive to innovate and sell devices; the drive for efficiencies in healthcare) for understanding what’s possible and achievable in the context of giving and receiving care? • How important are the wider discourses of self-care, independence for older people/LTCs for understanding how telecare is being perceived and implemented?

The significance of promise • Do we need an explicit engagement with the ‘promises’ of telecare? • How do such promises shape research? Implementations?

Questions contd. • Can (tele)care be managed? • Is good care something we can know in advance or is it emergent? • What happens when tensions between different ‘users’ (managers, professionals, patients, carers?) about ‘good care’? • What forms of evaluation are worthwhile and who should be asked to evaluate? • Can we afford participative evaluation? Can we not?

Prof. Flis Henwood and Dr Mary Darking University of Brighton