Project Objectives

The overall aim of this project is to deepen understanding of the potential for technology support of self management. The use of technology for this purpose is now attracting attention, but there are some fundamental issues that need to be researched. These include how information on changes in chronic conditions can be collated and fed back to users in a meaningful and usable way to help them to understand their condition; how such information, remote from a therapist can be presented to promote behaviour change and how this information can allow people to adjust life goals to accommodate and aid acceptance of their condition.

We consider that it is essential to ensure that any technology used for this purpose matches the needs of those for whom it is intended as well as complementing existing systems of service delivery. Therefore we will involve expert stakeholders (users, carers and professionals) throughout, using participatory design methodology. We will focus on three long term conditions (stroke, chronic pain and chronic heart failure), chosen to cover the spectrum of improving, maintaining and declining conditions over time. Users from all three groups will be involved at all stages of the project. Our project aim will be achieved by creating user-centred designs for technology, resulting in a personalised self management system (PSMS),and carrying out extensive studies of technology in use.

The first objective of the project is to investigate how technology can be used to construct tailored plans of interventions to be undertaken by an individual to meet identified needs. This will be achieved through a review of the evidence base in the first twelve months, and an associated option appraisal and testing of technologies that appear appropriate. User perspectives drawn from case studies will identify the factors that will influence usage.

The second objective is to identify how relevant signs, symptoms and lifestyle consequences of long term conditions can be effectively monitored, modelled and analysed. Work to address this objective will continue throughout the project and will necessitate the integration of selected technologies into a personalised self management system, identification and incorporation of the therapy content of the system and the design of the information platform, with user perspectives being taken into account throughout.

The third objective is to identify how information on signs, symptoms and lifestyle consequences can be fed back to users in a useable way in order to promote self management. Again, user perspectives will inform the construction of technologies and a platform that enables them to obtain helpful information in accessible formats.

The fourth objective is to examine the extent to which behaviour change is promoted through personalised feedback, remote from a health care professional, but delivered within a tailored plan of intervention. This will be achieved through a clinical evaluation of the system which will take place in the final twelve months of the project.

The final objective is to ensure that a comprehensive dissemination plan is in place from the outset and is actioned from the beginning of the project. This plan will involve providing summaries of progress and outputs (both written and verbal) at regular intervals for specific audiences including academics, service commissioners and providers, users of services and their carers. We will work with our project partners, other EQUAL Consortia and with the SPARC initiative to ensure that outputs meet these varying requirements.

Lay Summary

Chronic health conditions are those that a person has over an extended period of time, or for life. The sufferer and their family have to learn to live with the illness and its consequences. The UK government is concerned about the extent of chronic ill health and the cost of providing quality services to all who need them. This has led to a major rethink. As a result, there are a number of new requirements for health and social services. These include recognising the expert knowledge that the person with a long term (or chronic) condition has developed over time and introducing ways to help them to manage their symptoms. Professionals are being asked to work in partnership with people with long term conditions, so that the individual is in control of their treatment and care plan and what happens as a result.

More and more of us are using technologies in our everyday lives. This four year project will look at how technologies can be used to help individuals and their families to manage the consequences of long tem conditions and maintain quality of life, supported by professionals. It will involve:-

      1. Identifying the technologies that are capable of providing relevant information to users with long term conditions so that they can be helped to achieve realistic life goals, agreed through their therapy plan
      2. Working with users and health care staff to test which are the best technologies for this purpose, how devices can be most appropriately used and what the best forms of information feedback are.

For this project, we have decided to focus upon three very different conditions.

The first is stroke.
People who have a stroke were often fit and well beforehand. Stroke can leave the person suddenly physically disabled. Treatment and rehabilitation can continue for a long time to help recover mobility and ability to communicate.

The second condition is chronic pain.
This is a symptom of many long term illnesses and leads to very poor quality of life for sufferers.

The third is heart failure.
People with heart failure are restricted in what they can do and often have to go into hospital if their condition suddenly gets worse.

We have chosen these conditions because the technology we develop will have to be capable of meeting differing needs. The last phase of our project will involve asking people from each of these user groups to test the technology in their own homes so that we can find out the extent to which it is helpful in assisting them to make necessary changes to their behaviour.

An example of how the technology might be introduced to a person following stroke is as follows;

"Following discharge from hospital a community therapist visits the person in their home. The therapist undertakes a full assessment of need. They then log onto the home based computer and customise a programme of activity to meet the needs of the user using the 'stroke toolkit' element of the system, The person and the therapist then look at the library of life goals on the system and agree which the user would like to achieve or maintain over the next few months e.g. they may wish to be able to go to their allotment, to church or simply be able to get up from their bed to the bathroom during the night without falling over. The therapist then shows them how to wear a small sensing device which will record over time the amount or type of activity they are doing (walking, sitting, standing) and the quality of the activity they undertake. Once the user has practiced the programme of activity with exercises, understands how to score the achievement of their agreed goals and can attach the small sensors they will be left to manage their own individualised therapy plan. They are able to obtain feedback on progress through their computer and through email messages sent by the therapist who will be monitoring the user's progress from their place of work."

Relevance to Beneficiaries

The requirement to provide effective services to manage the increasing numbers of people with chronic, long term health problems has led to a policy focus upon self management as a cost effective solution. This proposal brings together this policy imperative with a second, which is concerned with how technologies can be most effectively used to provide maximum benefit to end users and their carers. It therefore has the potential to attract policy attention at the highest level.

The most significant initial beneficiaries will be industry. We have been able to attract project partners who are major providers of technology in the UK and globally, who can fully appreciate the importance of the questions we seek to address. Existing projects are considering how technologies might be constructed for self management of long term conditions. Our project will extend the evidence base by considering the fundamental issues that will determine the extent of uptake of such technologies by mainstream health and social care providers. Through partnership working with industry we will ensure that project developments meet industrial requirements and present an attractive practical and economic proposition.

In the medium to longer term, the most significant beneficiaries will be people living with long term conditions. At present, many people do not receive adequate help to cope with the immediate consequences of their condition, and beyond this, the necessary assistance to be able to achieve and maintain quality of life over what can be the rest of their life. The technology we propose has the potential to help individuals become empowered to successfully manage their own conditions and make necessary changes to their behaviour with minimal professional intervention. It will help people to achieve their life goals in their home and in the community and through this to re-engage with life. Ongoing consultation will help to ensure the needs of users and carers, together with the requirements of service are centralised throughout.

The use of technology for self management has the potential to decrease GP and hospital waiting lists as users become less reliant upon NHS provision. It will also help allocation of scarce therapy resources as staff will be able to be more selective about how they allocate the time they spend with users. Therefore the economic impact of this project cannot be underestimated.

Finally, we suggest that our work will stimulate debate within academic life and particularly within the growing multi disciplinary community concerned with technology to promote effective service delivery, as evidenced by the SPARC and New Dynamics of Ageing initiatives.