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Professional Development Manager
People who live with long-term health conditions have their own unique experience of their illness, symptoms and medicines and develop expertise in managing their condition. This expertise can be developed further through training and support. Expert patients are good at communicating with healthcare professionals and are well placed to engage in prescribing partnerships that can lead to effective medicines management, along with satisfaction for both patient and pharmacist.
The term “expert patient” was coined by Professor Sir Liam Donaldson, Chief Medical Officer for England, and the phrase is now widely used in the UK, although it is not universally popular. The characteristics of an expert patient are best defined as a person who:
The concept of training patients to become effective self-managers has been around for many years. The most widely used self-management training course was developed in the 1980s by Professor Kate Lorig at Stanford University (USA) for people with arthritis.(1) The effectiveness of the course has been validated by over 100 research studies, and course participants testify to a life-changing experience. In time, the effective outcomes were linked to Dr Albert Bandura’s theory of self-efficacy.(2) “People with high assurance in their capabilities approach difficult tasks as challenges to be mastered rather than as threats to be avoided”, Dr Bandura writes. This concept of mastery of the challenge seems to be the key factor. The Lorig model of self-management training is now widely taught in the USA, Canada, Australia, the UK and some European countries.
In the UK, the Lorig model of self-management training was pioneered by Arthritis Care, a not-for-profit organisation, in 1994 and then rolled out into a UK-wide service.(3) UK research studies demonstrated the same positive outcomes as those demonstrated in US studies, which attracted the attention of the Chief Medical Officer for England. In 1999, Professor Sir Liam Donaldson set up the Expert Patients Task Force to explore self-management training and make recommendations for development. In 2001, the Task Force reported and proposed that self-management training should be introduced to the National Health Service in England, making it the first government-sponsored programme in the world. The Expert Patient Programme (EPP) was born and, in 2002, pilot courses were run throughout England. The EPP is now being mainstreamed throughout the NHS.(4)
The Chronic Disease Self Management Programme consists of weekly sessions of two-and-a-half hours and takes place over six weeks. Courses are always held in community settings, never in a hospital or clinical environment. The course tutors – there are always two – are lay volunteers who have a long-term condition themselves. The tutors are carefully selected and trained to deliver the course from a scripted manual. There are usually up to 16 participants with a range of different chronic conditions. The course, a cognitive behavioural intervention, contains modules on symptom management, including medicine-taking, relaxation, exercise and diet, coping with fatigue and depression, and communicating with health professionals. Each week, every participant develops a personal action plan for the next seven days, setting achievable yet challenging goals, which are shared with fellow course attendees. At the next session, delegates report back to their colleagues about how they have got on. This public commitment to fulfil a personal challenge produces strong peer support and very positive outcomes. Statistical data from the first 2,000 participants who attended an EPP course showed:
Expert patients have learned to value and make use of pharmacists, as, of course, they should.(5)
Thus, there is a real opportunity for the development of effective partnerships between patients and community pharmacists, but the relevance to hospital pharmacists may seem more difficult to identify. There may need to be shifts in working practices to enable pharmacists to spend more time in consultation with in- and outpatients. With the development (at least in the UK) of policies on patient choice and involvement, more patients expect to be involved in treatment decisions. It is important for pharmacists to develop effective consultation skills, asking open questions and listening carefully to the responses. Research has demonstrated that it is a person’s health beliefs that most affect whether, and how, they will take their prescribed medicines.(6) These beliefs need to be identified and respected, along with an understanding of how medicine-taking will fit in with a patient’s lifestyle. Patients need detailed and accurate information in order to make informed choices. They need to know about potential benefits and harms, possible side-effects and what to do if they experience these.
Often, hospital patients do not receive written information about medicines to take home with them on discharge. Patients have spoken about their confusion when repeat prescriptions issued by primary care physicians result in medicines with different brand names, shapes or colours than the tablets they were given on discharge. There needs to be a more joined-up approach between primary and secondary care. Get these things right and positive partnerships will become the norm.
I would like to urge all readers to welcome the emergence of expert patients. In England, it is hoped that up to five million people will attend the EPP in the next 10 years. This large body of people will be interested and involved, will ask questions, read Patient Information Leaflets and the labels on medicine containers, and will value the role of pharmacists. This augurs well for the reduction of risk and for positive outcomes for both patients and pharmacists.