3. 'Expert patients' and self-management
An observation frequently made by doctors who care for patients with long-term chronic disease is 'my patients understand their disease better than I do'. Many patients are, indeed, 'experts' in their own right, as they have gained the life skills to cope with their chronic condition.
There is increasing evidence that with proper support, patients can take a lead in managing their own conditions. This can help to improve health, quality of life and reduce incapacity.
What is an 'expert patient'?
Expert Patients:
- Feel confident and in control of their lives
- Aim to manage their condition and its treatment in partnership with health care professionals
- Communicate effectively with professionals and are willing to share responsibility and treatment
- Are realistic about the impact of their disease on themselves and their family
- Use their skills and knowledge to lead full lives.
What is self-management?
The concept of patient self-management first emerged in the 1960s and 1970s - as a method for finding better solutions to living with illness. Often this meant patients taking more control over their lives by ceasing involvement with organised health care systems.
Today, the emphasis is very different. Self-management is seen as an integral, even central, part of the system of care provided to people with chronic diseases.
Patient self-management, or Expert Patients Programmes, are not simply about educating patients about their condition or giving them relevant information.
Programmes are based on developing the confidence and motivation of the patient to use their own skills, information, and professional services to take effective control over living with a chronic condition.
The primary model for this programme was developed by Professor Kate Lorig at Stanford University in California.
Stanford University's Chronic Disease Self-Management Program
In 1974 Kate Lorig, an American researcher at Stanford University in California, discovered through talking to people with arthritis that many of them had developed a vast resource of problem-solving and coping skills.
This led Kate and her colleagues to develop the disease-specific Arthritis Self-Management Course (ASMC).
The work led to the realisation that people with all kinds of long-term conditions are dealing with similar issues such as pain management, stress and low self-image which in turn led to the development of the generic lay-led Chronic Disease Self-Management Course (CDSMC) for people with a variety of long-term conditions.
This approach to the management of chronic disease, or long-term conditions, has been taken up in many countries all round the world including Australia, China, South Africa, Canada and many European countries.
The basic idea of a self-management course is that the group works together based on information received through the trainer.
The Living with Long-term Illness Project (Lill)
The Living with Long-term Illness Project, or Lill Project, was set up in September 1998 to increase knowledge about, and the use of self-management programmes for people living with long-term conditions.
Its aims were:
- to create a self-management information-sharing network,
- to facilitate robust monitoring and evaluation processes,
- and to map existing self-management interventions.
Its report, Partnerships for Successful Self-Management, published in 2001, provided a blueprint for the successful organisation of other self-management projects. The findings of this report fed into the work of the Expert Patient Task Force.
The Living Well Project
In 2001, the Living Well project further developed high quality lay-led self-management programmes for people living with long-term conditions, building on the work of the Lill project.
It did this by providing:
- information, advice and consultancy to organisations interested in developing self-management programmes,
- central coordination,
- tutor support,
- increasing the number of courses.
