Research Proposals

An outline proposal to the Department of Health by The Bayswater Institute,
Thames Valley University and Population Ageing Associates.

Background

The Department of Health 'NHS and Social Care Model' (1) has been established to pave the way 'towards better care and improved lives for patients with long term conditions' (p.7) and one of the key elements is 'promoting independence, empowering patients and allowing them to take control of their lives (p.7). It is widely recognised that technology variously described as telecare, telehealth and assistive technology has an important role to play in enabling people with long term conditions (hereinafter referred to as the 'clients') to remain in their own homes as long as possible. However, the technology has to be harnessed by the local care 'team' that supports each client. In this proposal we outline research that is systemic and takes a stakeholder orientation by adopting a sociotechnical systems approach to address the issues of how local carers can be supported to make good use of available technology.

Evidence Studies of the Use of Telecare for People with Long Term Conditions

The use of telecare is widespread in other countries, notably the USA (2) but, despite enthusiastic advocacy, it has not been widely implemented in this country. The Wanless Report (3) makes clear that in this area as in others, the 'supply' of the technology is quite advanced but the 'demand' remains weak. Our focus in proposing research to serve national policy in this arena is therefore on understanding the issues that inhibit the 'demand'. Lewis (4) reports that there have been over 400 trials of telecare in the UK covering all three of the areas of technological application identified by Barlow et al (5). These are:

1. Safety and security monitoring Developments in this area have focused on building technology into housing that, for example, protects patients with dementia from leaving cookers and taps switched on. There have been significant 'smart house' developments in Gloucester (6), Northampton (7) Glasgow (8) and the 'Millenium House' in Greenwich.
2. Physiological and activity monitoring Remote monitoring of physiological indicators such as blood pressure has been successfully implemented in many trials (9). A study by Hibbert et al (10), for example, demonstrates the new demands the use of this technology makes on nurse-patient relationships.
3. Care-related information The advent of the internet and interactive TV also makes it possible to offer tailored and interactive advice to clients in their own homes for example on the management of Type 1 diabetes, e.g. DAFNE (11) and Type 2 diabetes. e.g. DESMOND (12).

A full review of the findings of these trials and applications is not appropriate here but four conclusions are widely reported:

1. The technology has great potential for helping clients remain independent and enabling them and their immediate carers to become more 'expert' in managing their conditions.
2. The technology that is appropriate varies a great deal from one disease to another, with the severity of the disease over time and with the local care conditions of the client.
3. The technology has to be implemented with sensitivity because it can be difficult to use and may be invasive of privacy; as Chapman (13) asks 'at what point does automatic Sister become Big Brother?'
4. The process of deciding what technology to use and then of using and maintaining it falls on the people who provide the support network for each client. This 'team' may include health workers, social workers, care agencies, family and friends and may actually be a loose not very well co-ordinated network rather than a coherent team. As the Astrid project (14) identified it is not clear who in this network should take responsibility for assessing the role of technology and whoever takes responsibility is faced with understanding the many products on the market and findings ways of funding them. When the technology is in place it has to be used appropriately and kept well maintained. Regular reviews have to be undertaken as the client's condition changes.

An additional element is that the NPfIT will deliver access to significant patient records and national services in the next few years. These systems should provide further support for the care teams who look after people with long term conditions. Who within these care teams can access or use these services and contribute to the records of the clients is a further stakeholder issue to be addressed.

We conclude that it is currently very difficult for the local caring community to assess and implement telecare facilities that are tailored to the needs of each of their clients.

The Research Objective

Although there is widespread agreement that telecare technologies can help people with long term conditions remain independent there appears to be a relatively weak demand for it from the caring community that supports these people. Although many facets of this phenomenon could be separately researched we believe that the evidence points to this being a systemic problem. The local caring community as a social system is (1) complex and loosely integrated, (2) contains no-one with clear responsibility for telecare and (3) has little knowledge of available technologies or how to make use of them. Furthermore the technology that is appropriate will vary with every client and decisions about what to use will have to be made by the local caring community. Until the local communities of health and social workers, patients and local carers develop the confidence and expertise to deploy this technology demand for it will remain weak. For these reasons we conclude that research is required to understand the local care community as a system and to understand local stakeholders' views of the value of telecare and the issues involved in its use. The purpose of the research described below therefore is to explore the potential of telecare in the local care communities of two types of chronic disease in order to inform policies that will create a realistic demand for telecare and lead to its effective deployment.

Theoretical Underpinnings: A Sociotechnical Systems Approach

The delivery of successful telecare facilities is, in part, a technical issue. It is, however, inherently a sociotechnical issue and this theoretical perspective informs this research. Sociotechnical systems theory originated in the 1950s (Emery and Trist 15, Klein 16) and has developed as a rich and useful body of the theory and practice used in many countries since that time. The central tenet of the approach is that the technical system and the social system have to be co-optimised for the whole system to be successful. There are questions to be examined in the way local care agencies change and adapt to use the technology. There are also many questions about the respective roles of national and local agencies in formulating both technology policies and the administrative policies governing how the technologies will be used. We therefore conclude that a sociotechnical analysis of these issues is vital if successful telecare is to be delivered.

Amongst the set of sociotechnical principles formulated by Cherns (17) are three that are particularly pertinent to the delivery of telecare:

1. Minimum Critical Specification. This principle states that only the minimum should be specified by designers and policy makers in order that the human agents in the sociotechnical system have maximum freedom to tailor the system to local demands. The establishment of national policies and practices for the delivery of telecare will need to adopt this principle if local care communities are to have the discretion to tailor technology to the needs of the patient.
2. Power and Authority. This principle establishes the requirement that if people are given responsibility for work tasks they should have power and authority over the resources, information etc needed to complete those tasks. Telecare will create a set of new tasks and who undertakes them and what resources they need are important design questions for the new social system.
3. Incompletion or the Forth Bridge Principle. This principle recognises that the system is never finished and that it is necessary to ensure that the people in the system have opportunities to continue its development. Telecare is in its infancy and policies will be needed to learn from the experience of its delivery and seek progressive improvements. Building 'action research' into the delivery of telecare in order that care practitioners continue to collect and evaluate evidence of its usefulness is a mechanism by which this principle can be met.

Methods of Study

To establish the issues associated with developing a demand for telecare this project will make systemic studies of the agencies involved in delivering local services to the chronically ill in two disease categories. Studying two diseases with dis-similiar requirements will be undertaken to assess the different forms of telecare that are applicable and the issues associated with the delivery of diverse forms of the technology, At present the two categories we plan to study are dementia and diabetes because (a) they are listed as national priorities and (b) their support involves different forms of telecare, e.g. an emphasis on security and safety for clients with dementia and on education for self-management in the case of diabetes.

The project team would work with six PCTs (three in urban and three in rural locations) over a 24 month period. In each PCT the caring practices that support people with long term conditions would be studied in order to:

1. map the 'sociotechnical' system currently in place to provide support for people with long term conditions in the two categories - the different agencies both formal and informal, the roles they play and the responsibilities they take, the processes of delivering care and of reviewing it, the degree and form of co-ordination between services etc. Particular attention would be paid to the use of technology at present and where responsibility lies for the assessment of its use, its delivery, operation and maintenance and how it is paid for.
2. select 20 cases of each disease in each PCT (240 cases in total) and evaluate, through the views of the stakeholders, the effectiveness of the current sociotechnical system, especially the technologies in place, in order to establish 'felt needs'. Cases will be selected, where possible, which have already deployed some form of telecare in order that the current state of the art can inform the project as much as possible. Cases will also be selected to reflect a range of degrees of severity and the different circumstances of the client in order to establish the variety of requirement.
3. since it is unlikely that examples of the range of telecare technologies will be in place, create scenarios in which the different telecare technologies (e.g. safety and security monitoring, physiological and activity monitoring and care-related information) are embedded in the existing care structures for each setting. The scenarios will be based on serving the 'felt needs' as expressed by local stakeholders. Organise scenario evaluation workshops/focus groups in which local stakeholders review the scenarios and prioritise possible applications of telecare. The user cost-benefit evaluation procedure developed by Eason (18) would be used to provide systematic reviews of the scenarios and would identify priority areas for the application of telecare in each disease category.
4. explore with local stakeholders the sociotechnical ramifications of the adoption of prioritised applications in each setting, i.e. how would the new 'system' work, who would be responsible for the selection of telecare services for each person, who would monitor, who would respond, who would pay, who would review etc. What are the implications for changed responsibilities, local procedures, training etc.
5. ask a Critical Reference Group to receive and consider the results of the field work. It would consist of representatives of national stakeholding groups, e.g. Social Care Services and community medical, nursing and management representatives. It would examine the findings and explore the implications for national policies. This stage would define the degree of discretion that would be needed locally to promote the use of telecare and would therefore also define the minimal critical specification required in national policies and programmes. The aim would be to bring together the supply and demand for telecare.

Dissemination, Project Organisation and Partners

Theoretical contributions would be disseminated to academic audiences on the use of sociotechnical systems approaches to the adoption of IT systems. Evidence would be published on the diversity of requirements that exist for telecare and the implications for the local care community. Policy proposals would be developed in relation to the creation of a national infrastructure for the delivery of telecare (a) that would ensure it can be tailored to meet the diversity of needs and (b) that learning from practice could be fed back to inform the future development of policies and practice.

The Bayswater Institute (specialists in sociotechnical systems approaches) would lead the project. Staff from the Health (especially community medicine) and Computing (specialists in usability) Faculties of TVU (Thames Valley University) will contribute health and IT expertise. PAA (Population Ageing Associates) would provide specialist consulting advice on telecare assessment and business issues. The Faculty of Health and Human Sciences at TVU has established links with 12 PCTs and, in particular, is engaged in joint work on diabetes. The project would create a steering committee of major stakeholders to include Dept. of Health representatives, NHS health and social care staff, patient and charity representatives and a representative from an independent social entrepreneurial organisation. Ethical issues will be guided by NHS Trust research governance protocols and guidance on involving users in NHS research will be taken from Involve (19).

References

1. Department of Health (2005) 'Supporting People with Long Term Conditions' Department of Health, Quarry House, Leeds.
2. Berry B.E. and Ignash S. (2003) 'Assistive technology: providing independence for individuals with disabilities' Rehabilitation Nursing, 28 (1) Jan/Feb.
3. Wanless D. (2002) 'Securing Our Future Health: Taking a Long Term View', HMSO.
4. Lewis C. (2004) 'Remote control' Health Services Journal, 29th January 32-33.
5. Barlow J., Bayer S. and Curry R. (2003) 'New care delivery models and the deployment of telecare' Proceedings of the 3rd International Conference on the Management of Healthcare and Medical Technology 'The Hospital of the Future' Warwick Business School 7-9 September.
6. Orpwood R. (2001) 'Designing support equipment for the Gloucester smart house' In 'Dementia Care 2000' Conference Proceedings, London, Hawker Publications.
7. Frisby B. and Woolham J. (2001) 'Using technology in dementia care: why it's not used and how it can be. In Dementia Care 2000 Conference Proceedings, London, Hawker Publications.
8. Pollock R, Bonner S. and Gibbons K. (2000) 'This is the house that JAD built' Journal of Dementia Care 8 (4) 20-22.
9. Johnson P. (2004) 'Patient’s use of self telemonitoring in 21st century clinical care in the community' British Journal of Healthcare Computing Information Management 21(1) 22-26.
10. Hibbert D., Mair F.S., May C. R., Boland A., O'Connor J., Capewell S. and Angus R.M. (2004) 'Health professionals' responses to the introduction of a home telehealth service' Journal of Telemedicine and Telecare 10, 226-230.
11. DAFNE: Dose Adjustment For Normal Eating http://www.diabetes.org.uk/infocentre/inform/dafne.htm
12. DESMOND: Diabetic Education for Self-Management: On-Going and Newly Diagnosed http://www.desmond-project.org.uk/
13. Chapman A. (2001) 'There’s no place like a smart home' Journal of Dementia Care, Jan/Feb 28-31.
14. Marshall M. (2000) 'ASTRID: A guide to using technology within dementia care' London, Hawker Publications (http://www.ASTRIDGuide.org)
15. Emery F.E. and Trist E.L. (1960) 'Socio-Technical Systems' In Churchman C.W. (ed) 'Management Sciences, Models and Techniques' London, Pergamon
16. Klein L. (1994) 'Sociotechnical/organizational design' In Karwowski W. and Salvendy G. (ed) 'Organization and management of advanced manufacturing' Wiley, 197-221.
17. Cherns A.B. (1987) 'The principles of sociotechnical design revisited' Human Relations 40, 153-162.
18. Eason K. D. (1988) 'Information Technology and Organisational Change', London, Taylor and Francis.
19. Involve (2004) 'Involving the public in NHS, public health and social care research: Briefing notes for researchers' Eastleigh, Involve.