EUROPEAN KNOWLEDGE TREE GROUP
MISSION STATEMENT
Executive Summary
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The Group is a small collection of professionals from various disciplines who have an interest in promoting the practical utilization of telehealth and telecare. It has its base at the London School of Economics. Part of its inspiration comes from experience of telehealth and telecare in the wider European Union. Its perception is that despite a number of initiatives, including the Department of Health's Concordat with the telehealth and telecare industry, there is still much to be done to coordinate efforts to maximise the effective deployment and use of assistive devices in the field-particularly but not exclusively in England. The field is wide. The potential beneficiaries in it include the disabled of all conditions and of all ages, as well as the elderly and the infirm. It is perceived that, in an era where the use of telecommunications is rapidly becoming more familiar, more and more individuals will be able to benefit from information and other assistance delivered remotely. The players in the field are many and diverse. They include inventors, manufacturers, suppliers, financial providers, public authorities and others-as well as end users. It is important that these players be brought together so that they can learn from each other and so make their efforts more efficient and productive. The primary tool which the a-m, will, at this initial stage, use is the organisation of an annual conference to which as wide a range as practicable of relevant individuals and bodies will be invited to participate and share experience and aspirations. It is hoped that this will significantly advance the effective creation and distribution of devices in the field. In the longer term the Group may take further initiatives, including educational and training initiatives.
Background
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Telehealth can be defined as healthcare service, consultation and expertise delivered via telecommunications media, over any distance. Service delivery could be done in real time or stored and broadcast, through media ranging from simple telephony conversations and Internet to video conferencing across borders. The services could involve consultation, patient monitoring, diagnosis, prescription, treatment or even surgery. Real-time telehealth services could involve Tele-mental health, Tele-rehabilitation, Tele-cardiology, Tele-neurology, Tele-nursing, or Tele-dentistry. Some people split telecare and telehealth, which can further complicate the overall picture, availability, funding and provision. Across the UK the system varies and in times of stringency many policies and practices are being curtailed. Health, informatics and telehealth form two of the major technological sectors of e-health Though both these techniques form, cores of e-health, the integration of the two techniques is minimal. While telemedicine, forms the core of telehealth, health telematic techniques are evolving at the convergence of health, informatics, telehealth and telemedicine.
Chart 1 explains the sectors of e-health, as the Group perceives them:
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The advantages of telehealth services include more access to their own medical data by the patients (as found for 300,000 people in Estonia), improved patient health outcomes and decision making, reduced healthcare costs, travel time, redundant diagnostic procedures or tests and patient waiting time and eventually improved early diagnostic, administrative and communication capabilities. Telehealth makes reliable evidence-based medical consultation from healthcare providers and specialists, available for maximum utilisation.
Few health or social care professionals have telecommunication education or training to prepare them to understand user needs; even within industry there is scant coverage of regulatory standards. We strongly believe an on-line and face to face training system to meet this requirement should be introduced speedily.
The current situation
This statement sets out to uncover how it is that the UK, and England in particular, lags behind the EU and the rest of the world in the provision of telecare and telehealth products for older and disabled people. Despite enormous advances in technological solutions in the areas of telecare and telehealth, implementation and provision could best described as "patchy" with a nationwide disparity in the quality and provision of services. Why should this be?
The Whole System Demonstrator (WSD) programme of 2011 in England provided evidence that telecare and telehealth were viable solutions for older and disabled people living independently and taking control of their own health and care. Furthermore, the WSD programme found that, "if delivered properly, telehealth can substantially reduce mortality, reduce the need for admissions to hospital, lower the number of bed days spent in hospital and reduce the time spent in A&E." Given these positive results, it does beg the question as to why there is a lack of commitment or urgency in delivering these services.
Fingers point to a lack of leadership. The model shown in the image below represents how the older or disabled person is currently supported. Although there is a concentration of resources at the local level with a cluster of service providers and the cared-for, the policy-making bodies, commissioning bodies, advocacy bodies and regulatory bodies are mostly distinct silos that are distanced from each other and from the cluster of care-centric users and providers situated at the core.
Chart 2 Supporting the older or disabled person:
These silos suggest a lack of integration that raises questions of ownership, leadership and vision. Furthermore, and more importantly, this model demonstrates there is no relationship with the assistive technologies industry.
In the EU, the scale of demand for assistive technologies is frequently far higher, although the supply chain can be complex.
The position in Europe
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Federating EU assistive technology ICT Industry in EU report demonstrates a clear linkage that connects all the stakeholders in the area of assistive technologies and includes the assistive technologies industry. The areas of product research and development, production, distribution and retailing of assistive devices all play a vital role in a broader care-centred model. For example, product R&D is the means that drives innovation and drives improvements in both the quality of the product and how that can enter the telecare or telehealth supply chain and the experience of the product's end user.
Chart 3 EU ICT supply chain:
The model isn't perfect, and the authors identify several barriers such as the cost and time needed to navigate the different national service provider systems in Europe in order to ensure compliance.
The future in the UK
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Notwithstanding, the EU model does demonstrate that industry has an important and influential part to play in the future of assistive technologies. The supply side of assistive technology already adds enormous value to the lives of older and disabled people through innovative and creative solutions, but these industries lack influence in the UK. In fact, they barely gain an acknowledgement. It shouldn't be this way.
The UK, as applied to health and social care provision, is no longer one country. Wales, Northern Ireland, and especially Scotland, lead the way with telehealth applications. This is principally because in all three countries services have been unified. England was the leader but still has separate health and social services. Despite the upward pressures of demand in England, it is planned to make a £20 billion reduction in the health care budget by 2015, as identified by Deloitte LLP 2012. At local level there is conflict, rather than co-operation, between health and social care budget holders. Do we address this case at Government level to reduce budget cuts or at local level to encourage co-operation of telehealth planning in England?
Clearly, whether you are a patient, a carer, or a member of an authority providing finance, it must be acknowledged that the disparity between increasing demand and the capacity to supply that demand is unsustainable.
The wider world and implications for future in the UK
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On a wider world basis, the WHO Convention on the Rights of Persons with Disabilities (Articles 20 and 26) is recognised. The WHA resolution WHA58.23 and the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities all highlight the importance of assistive devices. We might, also look to the USA, where the law determined by Congress (1998) amended the Rehabilitation Act (1973) to require Federal agencies to make their electronic and information technology (EIT) accessible to people with disabilities. Section 508 was enacted to eliminate barriers in information technology, open new opportunities for people with disabilities, and encourage development of technologies that will help achieve these goals. The law applies to all Federal agencies when they develop, procure, maintain, or use electronic and information technology. Under Section 508 (29 U.S.C...794 d), agencies must give disabled employees and members of the public access to information that is comparable to access available to others. Standards in the USA are often seen as the minimum for other countries; as a result many smaller nations use this law as a basic standard.
In Spain, the government implemented the Dependency Law (2006) for personal autonomy and care for people in a situation of dependency in the community with ring fenced funding. Older and disabled people in Sweden using ICT may be somewhere between 57% - 84%, depending on the category. France also enjoys a much higher standard of technology supported care, thanks to earlier government policy and the integration of industry in the care delivery system within the EU. The assistive technologies industry already provides creativity passion, leadership and vision within the industry body, and telecare and telehealth products have a proven track record in enabling older and disabled people to live independently and take control of their own health and care. This statement, demonstrates an alternative to our current system which, could reignite the passion, leadership and vision for the provision of telecare and telehealth that leads the world.
How best to support that development?
Education of policy makers and budget holders to understand cost effective actions would be an important start. A stronger voice for User and Carer Advocates could work alongside industry to ensure sound policies and practice is implemented4lpt the same old boxes", people say, "We need mobile technology, which moves around the community with the user". Importantly, there is a strong need to divert, government support and funding from the same old thing, where there is little or no impact for society. We just cannot afford that any longer. Telehealth has a potential to improve care and save money.
References:
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Whole System Demonstrator (WSD) (2011) UK Government website
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Deloitte LLP (2012) Primary care: Working differently: telecare and telehealth
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Analysing and Federating EU assistive technology ICT Industry in EU (2009) J. Stack'et at
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WHO Convention on the Rights of Persons with Disabilities (2008)
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The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) USA Government
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Rehabilitation Act (1973) (Sections 504 and 508) USA Government
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Dependency Law (2006) Spanish Government