Supporting the everyday experts

pharmafile | April 26, 2004 | Feature | |   

We are all familiar with the growth of the ageing population during the second half of the 20th century and into the 21st century, which has seen many more people living into their seventies, eighties and beyond. This has brought an increased burden in developed countries from many illnesses and diseases that are chronic or long-term, rather than acute, with one in three people in England today living with chronic illness.

Born out of the issues facing the NHS of managing this ageing population effectively with conditions such as heart disease, stroke, cancer, arthritis, diabetes and mental illness, the idea of developing a major initiative on the 'expert patients' was proposed. Set out in the Government's 1999 White Paper, Saving Lives: Our Healthier Nation, initial details of the proposal were announced with a further commitment to implementing a formal programme published in The NHS Plan in July 2000.

The Expert Patient Task Force

Led by chief medical officer, Professor Sir Liam Donaldson, an Expert Patients Task Force comprising voluntary sector organisations involved in self-management, people living with long-term conditions and healthcare professionals was set up to design an Expert Patients Programme (EPP).

This Task Force, made up of over 40 key personnel, brought together the valuable work of patient and clinical organisations to develop self-management initiatives for patients. These included representation by Non-Governmental Organisations (NGOs) such as the Long-term Medical Conditions Alliance (LMCA), Age Concern and Diabetes UK plus professional representation from the Royal College of General Practitioners (RCGP), Royal College of Physicians (RCP), the Royal Pharmaceutical Society of Great Britain and the Royal College of Nursing.

The prime objective of the EPP was stated as being 'to support people with chronic medical conditions who can self-manage their own conditions. Research has shown this to be the most effective way of enabling patients to take effective control over life with a chronic illness'.

It has been recognised that  people living with chronic diseases are the 'experts' on their condition and when supported to develop the confidence and necessary skills, can make a tangible impact on their disease and more generally on their quality of life. The EPP recommended that the means through which this could most effectively be achieved would be the development of an EPP using lay-led self-management interventions specifically, in the first instance, the Chronic Disease Self-Management Course (CDSMC) developed by Stanford University, California.

Implementation

The publication in September 2001 of the Task Force report, The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century, proposed that the programme should be implemented in full over a six-year period. It outlined the piloting of lay-led self-management programmes for patients with chronic diseases within the NHS in England that would be piloted between 2001 and 2004 with local programmes being vigorously evaluated. The mainstream programme was then to be rolled-out between 2004-2007 within all NHS areas.

Pilot programmes

Pilots to train Expert Patients have been undertaken during this first phase of the programme in the majority of PCTs in England. An EPP Implementation Group (EPPIG) is overseeing these.

Membership of the EPPIG includes pioneers of self-management courses originating from the voluntary sector, DH officials and representatives from the wider NHS.

The latest figures for the EPP are as follows:

• 300 PCTs delivering courses
• 783 courses delivered
• 8,382 registered for a course
• 520 volunteer tutors trained

The task of the EPP pilots has been to implement an evidence-based training programme to be used across the NHS following extensive evaluation.

The course is based on the Chronic Disease Self-Management System (CDSMS) that was developed in the United States, but adapted for use in the UK. It consists of six weekly sessions of two and a half hours. Each week, two volunteer tutors lead eight to 16 participants through topics such as breaking the symptom cycle, diet, exercise, communication, medication and pain management.

Participants use a course manual called Living A Healthy Life With Chronic Conditions, which is based on a book used at Stanford University.

Evaluation

Evaluation is being undertaken by a team of researchers at the National Primary Care Research and Development Centre (NPCRDC) of the University of Manchester and the NPCRDC of the Centre of Health Economics at the University of York.

A national randomised controlled trial will also be carried out, as well as in-depth qualitative analysis, on how the EPP is being implemented at the local level at various PCT sites in England. Urban and rural areas will be covered, together with different geographies, demographics plus various ethnic, gender and disease-specific groups.

The key aim of lay-led self-management is to empower people living with long-term conditions to attain the greatest possible quality of life by working in partnership with health and social care professionals to make best use of all available resources.

Some patients, by the very nature of their illness or personal circumstances, may find the EPP hard to access and developments are underway to look at how the programmes can be adapted for a range of client groups.

Therefore multiple entry points for the programme will need to be created for accessing information about courses such as  the internet, local community and voluntary sector groups in addition to more traditional routes like the GP surgery and to produce training materials in formats that do not presuppose a certain level of mobility, literacy  or just as importantly, economic status.

The LMCA

Voluntary organisations and in particular LMCA have played an essential role in supporting the development of the EPP. Voluntary sector organisations pioneered the use of lay-led self-management programmes throughout the 1990s. LMCA Living with Long-Term Illness project (Lill) introduced the widespread use of the CDSMC and has continued to support the development of lay-led self-management within the voluntary sector through its self-management networks. LMCA has actively facilitated and supported relationships between the EPP and the voluntary sector at a national and local level. Partnership working has become integral to the future development of the EPP, an indication of which was the part-time secondment of LMCA director of self-management, Jane Cooper, as a special advisor to the EPP at the end of 2003.

As of April 2004, the strategic direction of the EPP will be led by the Department of Health Director for Patients and the Public while the operational management will be delegated to the Clinical Governance Support Team at the Modernisation Agency.

As the EPP moves towards the next phase of rolling out the programmes, LMCA and its member organisations look forward to playing a central role in supporting the development of successful partnerships for self-management which will increase the availability of high quality lay-led self-management programmes for people living with long-term conditions.

Confirming the importance of patient self-management at The Guardian Birmingham Conference recently, Health Secretary John Reid said: "Chronic disease has a huge impact on quality of life, and it consumes a large proportion of health and social care resources. There is a lot happening both locally and nationally to introduce better chronic disease management, but I firmly believe this needs to be spread.

"The rising incidence of chronic disease is the greatest challenge facing the NHS, with 17.5 million people currently having a chronic condition in the UK," Mr Reid added.

Demonstrating the government's commitment to managing chronic diseases, plans to cut the number of emergency hospital admissions by enabling people with chronic conditions to better manage their own care were also announced at the Conference. Mr Reid said a new strategy had been developed in partnership with US healthcare organisation Kaiser Permanente Evercare. They have been working with PCTs to cut costs and improve patient satisfaction through better management of chronic disease.

Implications for the industry

What implications does the EPP have for the pharmaceutical industry? Can and should the industry participate? If it should, how can it work with the national voluntary organisations, research institutions and public bodies providing information and training resources to the EPP in providing valuable information and resources that are perceived to be unbiased and unpromotional?

Policy makers within the pharmaceutical industry need to look at the EPP critically and decide whether they believe in it. Is it good enough? Does the published evidence demonstrate how effective the EPP will be in encouraging patients to take their medication properly? Roy Jones, a member of the EPPIG, and past director of services at Arthritis Care, thinks it will.

"Concordance is a sub-set of self-management and this ties in well with the pharmaceutical industry agenda," he said.

The industry also needs to look at the behavioural changes the prescribers need to adopt to fit in with this concordance agenda. Many GPs are not up to speed with the EPP yet and lack awareness of the programme. They require a better understanding of how Expert Patients will differ from an average patient with a chronic disease. Opportunities therefore exist for raising awareness of the EPP and providing support in areas where policy can be affected.

Working with third party organisations such as Patient Advocacy Groups (PAGs), in relevant therapy areas is something the industry has been supporting for many years. Working in conjunction with organisations to develop non-promotional key training programmes, which enable those with chronic conditions to anage their lives is an excellent way the pharmaceutical industry can support the EPP.

Dr Nicola Jones, a managing partner from Earlsfield, South West London and member of the EPPIG believes that Expert Patients have the confidence to manage their condition.

"They demonstrate resourcefulness, not asking 'what should I do?' but 'do you think this will work?' They have control, something that many people with chronic conditions do not have until they are able to manage their own illness," she said.

Jane Cooper, director of self-management at the LMCA believes there are a number of ways in which pharma companies could support the development of lay-led self-management. "By providing support for continued research and development of effective interventions and through developing partnerships with self-management stakeholders to champion the ethos of lay-led self-management to health professionals and key policy makers so that it really does become part of mainstream service provision.

In summary, the EPP offers great opportunities for pharma if some key points are kept in mind:

• Pharma must avoid the tendency to immediately try to promote their product.
• Pharma should try to understand the EPP agenda for their particular area and look to create 'win-win' or areas of mutual benefit.
• They should support aims of the EPP and take a flexible approach provided there is payback for the company. This is clearly more suited to market or segment leaders. For example with a view that better managed patients equals more patients managed equals more sales.
• Information they provide needs to be:Credible – from a recognised name; Reliable – information needed; Understandable – layman terms; Actionable – can be acted on step by step; Expert-based – from a respected name/source; Timely – available at time of diagnosis or treatment; Easy-to-access – delivers on a self-service basis by respected third parties.

Different information needed

Pharma also needs to recognise that different information will be needed at different stages in management. For example, initiation of treatment requires general help information and clear product usage guidance; however living with a chronic disease is more about self-help and day-to-day management.

Historically we have seen that pharma can move faster than the NHS. Clearly if pharma wishes to be involved, timing is key. Companies need to assess the pace of change at local or regional level and then provide timely, acceptable and appropriate support to make things happen.

Full details of the document The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century can be viewed and downloaded from the Department of Health website :www.ohn.gov.uk.

The Department of Health publishes a newsletter, EPP Update, with the latest information on The Expert Patients Programme.

Email london@profbriefings.co.uk to obtain a copy of the current issue and be placed on the mailing list.