The Patient Paradox part 3: Expert patients
In our third and final installment of The Patient Paradox, Dr Margaret McCartney looks at the phenomenon of the 'expert patient'.
If you were to listen within the towers of the Department of Health, you would hear a clarion call to the ‘expert patient'. This new title has been created and bestowed upon people who have chronic illnesses, who are called to attend a course, typically an hour a week for a set time, and led by a layperson. The Department of Health reports that most of us – 60% – have a chronic illness.3 The course is offered to anyone with a ‘chronic illness' from arthritis to seasonal affective disorder. But not all patients want to be intimately involved with their healthcare to the extent that it takes up even more of their time. The costs of being ill can include time taken to attend hospital and GP appointments, the ordering and collection of prescriptions, time off work when ill or recovering and, potentially, difficulty holding down a job. Chronic illness often has a disruptive effect on family life: we already know that many people are unpaid carers on many levels to family members and friends.
Again, this is the paradox of being a modern patient. The more likely you are to need help, or to benefit from medical care, the less easy it is to access it.
The ‘Expert Patient Programme' (EPP) is run by the NHS, for patients, and boasts the slogan: ‘Control your condition, don't let it control you' and offers ‘the confidence, skills and knowledge to manage chronic health conditions such as arthritis, asthma, diabetes, heart disease and multiple sclerosis'.
One thing is unarguable. People should have access to good information about health to help them make good decisions. People should also have the support they need. But the push is for patients to be involved in their healthcare to an extent previously unknown, with responsibility equal to that of doctors.
One one level that's valid. Patients, in the end, have to present themselves for treatment or take medication, not doctors. But should patients be responsible for ensuring that they get the best treatment with the fewest side-effects? How far should this responsibility stretch? Should patients be charged with searching the internet with the inference that better treatments are out there? This is what the EPP refers to as ‘self-advocacy'.
Yet the more ill you are, the less able you are to do that homework. If I am so unwell that I cannot educate myself on the best treatment available, I want to know that someone else will do that for me. Why on earth should only the most motivated, literate and able people be further advantaged by their abilities to seek ‘the best' in healthcare?
Doctors should ensure that their patients have the same good treatments regardless of their abilities to identify and find them. This is the hallmark of professionalism. Yet, as we have seen, unbiased advice and treatments can be difficult to find, for patients as well as doctors.
The EPP was evaluated by a team from the National Primary Care Research and Development Centre, which was closed in 2010.4 In 2004, the centre published an evaluation of the EPP programme as it stood. Some of the comments are particularly illuminating. For example, on the naming of the programme, as noted by one of its administrators:
‘Even the patients, for want of a better term, themselves have said that they don't like it because they say that just because they've got some sort of disability or disease doesn't mean that they're a patient. They don't see it as ‘we're all prospective patients' they see themselves as being labelled again. And of course the GPs and the consultants don't like the ‘expert' part of it because they don't see it in terms of that beautiful quote that was in the document, you know, which I think was something like ‘my patients understand (their) disabilities better than I do'. They don't see it in those terms, they see it in a threatening ‘I know what's best, you know nothing' kind of way.'5
The peculiar thing about the ‘expert patient' nomenclature is the nonsense of it. Of course patients are the only ones who know how they are feeling and who are able to describe what is happening to them. They can be the only ones who know the level of uncertainty they are prepared to tolerate about their diagnosis, or which tests or treatments they want to have. But it is silly to start a competition between doctors and patients about who is the more ‘expert' and in what. ‘Patient' should perhaps describe the nature of a relationship with a doctor, rather than a person, and in the end, there is always going to be a difference between doctors' and patients' knowledge of a condition and ability to contextualise and place it in perspective. It is interesting to note that this competitive discord between doctors and those they are meant to serve has been introduced and propagated by politicians. We might ask why. Do we really want to set doctors and the people they have been trained to treat against each other?
In the meantime, we should ask if being an ‘expert patient' does any good. One study suggests that those who go on these courses have a cost-effective rise in the quality of their lives. The measure used was the QALY (quality-adjusted life years), which was raised by the programme by a points score of 0.020.6 A year of perfect health is scored at 1.0.7 How meaningful, therefore, was this course in terms of people being better able to manage their condition? We are left a bit unsure. A Cochrane review published in 2009 looked at all the evidence available about self-management programmes led by laypeople, as the NHS scheme offers, and concluded that:
‘These programmes may lead to small, short-term improvements in patients' confidence to manage their condition and perceptions of their own health. They also increased how often people took aerobic exercise. Whilst there were small improvements in pain, disability, fatigue and depression, the improvements were not clinically important. The programmes did not improve quality of life, alter the number of times patients visited their doctor or reduce the amount of time spent in hospital.'8
The National Primary Care Research and Development Centre had also interviewed people who had taken part in an EPP course. It found that:
‘. . . even those who report significant needs will sometimes portray themselves in a way that suggests positive social comparisons, which fit with a rationed and morally prescriptive and acceptable view of entitlement to NHS services. Such insights suggest that social comparisons in initiatives such as the EPP may be beneficial for some but exacerbate rather than alleviate health inequalities in long term condition management for others.'9
The bottom line: the most disabled gained less.
The EPP seems ill equipped to give greater resources to those who are struggling most with their condition or who are most disabled. Rather, it is the more articulate, well informed people, with time and energy to spare, who may be most likely to go along to these groups. Such people would probably have been able to get help for themselves anyway, even without the EPP. Indeed, as the National Primary Care Research and Development Centre found, this is exactly what happened.
‘In the initial phase, the EPP courses drew in people already committed to self-managing and who tended to be white, middle class and well educated . . . if those who stand to benefit most from learning self-management skills (in particular people from ethnic minority groups and areas of high deprivation) are disinclined to participate, then one disadvantage would be to increase inequalities.'10
If a person does not go on an EPP course, does that mean that they are less expert than those who do?
The EPP is not serving the sickest patients well.
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3. Department of Health. Improving Chronic Disease Management. www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4075213.pdf
4. National Primary Care Research & Development Centre www.medicine.manchester.ac.uk/primarycare/npcrdc-archive/archive/
5. Kennedy A, Gately C. Assessing the Process of embedding EPP in the NHS preliminary survey of PCT Pilot sites. National Primary Care Research and Development Centre, January 2004. www.medicine.manchester.ac.uk/primarycare/npcrdc-archive/Publications/EPP%20Report%202004.pdf
6. Richardson G, Kennedy A. Cost effectiveness of Expert Patients Programme (EPP) for patients with chronic conditions. J Epidemiol Commun H 2008; 62:361-367 jech.bmj.com/content/62/4/361.abstract
7. Phillips C. What is a QALY? What is…? Series, April 2009 www.medicine.ox.ac.uk/bandolier/painres/download/whatis/QALY.pdf
8. Foster G, Taylor SJC. Self-management education programmes by lay leaders for people with chronic conditions. The Cochrane Library, Jan 2009 onlinelibrary.wiley.com/doi/10.1002/14651858.CD005108.pub2/pdf/standard
9. Rogers A, Gately C. Are some more equal than others? Social comparison in self-management skills training for long-term conditions. Chronic Illness2009; 5(4):305-317 chi.sagepub.com/content/5/4/305.abstract
10.National Primary Care Research and Development Centre. Expert Patients Programme (EPP): national evaluation. NRCRDC archive site, December 2010. www.medicine.manchester.ac.uk/primarycare/npcrdc-archive/archive/ProjectDetail.cfm/ID/117.htm