The United Kingdom Expert Patients Programme: results and implications from a national evaluation

In terms of implementation, the power of the NHS to roll out a new program is illuminated by the uptake of the EPP nationally. At the end of the pilot phase of the EPP, results of a national survey of PCT leads suggested widespread participation and uptake by the primary care organisations charged with running local courses. About 10% of the 300 PCTs in the UK became enthusiastic champions of the EPP. The best predictor of success was time dedicated to the EPP, irrespective of organisation size. The PCT leads who dedicated the most time to the EPP (generally over 2 days a week) ran more courses, cancelled fewer courses, were able to attract and train more tutors to deliver courses, and were more likely to have significant plans for future courses.2

We recruited 629 patients with a range of self-defined long-term conditions to a randomised controlled trial. Outcomes were assessed in all patients regardless of the number of sessions attended (intention-to-treat analysis). Our comparator group was a 6-month waiting-list control group (a non-waiting-list comparator was excluded on the grounds of the ethical issues arising from denying access to treatment). Three primary outcome measures of effectiveness were examined 6 months after recruitment:

• Self-efficacy — a measure of belief in one’s ability to achieve a goal; in this case, successfully managing life with a long-term condition.

• Energy — chosen as a health status outcome relevant to people with a range of long-term conditions.

• Routine health services utilisation — the total number of general practitioner, practice nurse, emergency department and outpatient attendances by each patient in the trial over 6 months.

Additionally, cost-effectiveness outcomes were based on a comprehensive assessment of the costs of the program (primary care, specialist, community, medication and out-of-pocket costs) combined with a measure of health-related quality of life (EQ-5D,3 which measures self-reported mobility, pain, anxiety/depression, self-management, and ability to perform usual activities).4 The patterns of scores, weighted by UK population, allow estimates of quality-adjusted life-year (QALY) gains, and the economic analysis combines with these estimates to examine cost per unit gain in QALYs.

The main results are summarised in Box 2 and full results have been published previously.5 The “effect size” is a measure of the overall impact of the program and can be used to compare the impact of the EPP with other interventions. Based on the effect size, referral to the program had a moderate positive impact on self-efficacy, a smaller impact on reported energy, and little impact on routine health services utilisation (Box 2).5 Patients showed improvement in health-related quality of life equivalent to providing them with an extra week of perfect health per year, and combining costs and outcomes showed the program was likely to be cost-effective.5 This reflected the fact that the program improved health-related quality of life but did not add to the total costs of care, because reductions in service use (especially expensive inpatient stays) offset the costs of providing the self-management skills course (Box 3). One issue to note is that patients’ out-of-pocket expenses increased.

The nested qualitative study undertaken alongside the trial identified additional possible benefits for patients. These included a valuing of social support from participating in a group, and reduction in social isolation. Increased social networks made possible through contact with new people was one unexpected feature reported by a number of participants.6

As the EPP was conceptualised as a public health intervention, reach and engagement become key factors in equitably connecting with those most likely to benefit. Our process evaluation revealed that the EPP appealed most to white middle-class people with long-term conditions who already viewed themselves as effective self-managers.7 A key limitation was that, relative to the numbers of people in the population with a chronic illness condition who were likely to benefit, there was poor uptake and attendance. Another study examining a lay-led self-management initiative, of ethnic minority groups living in a deprived inner-city area, found similar results.8

Traditionally, self-efficacy has been thought to mediate the effects of lay-led self-management courses. That is, the course increases patients’ confidence in their ability to manage their problems, which in turn improves other outcomes. Although research using discrete choice methods has shown that self-efficacy is something that is clearly valued among the participants of the EPP trial,9 the importance of self-efficacy as an outcome rather than process measure may have been overstated.

Using mixed qualitative methods, we found that some expectations were not dealt with because the self-management skills training program prioritised improvements in self-efficacy and did not engage with patients’ material and social needs. An approach that focuses on self-efficacy may inadvertently sideline the relevance of social inequalities in patients with long-term conditions, and patients’ personal experience and their adaptation to their long-term conditions.

For instance, social comparison is a process that is important in enhancing self-efficacy in group-based programs, but this can have a negative effect. Being poor and ill brings with it the possibility of shame and insecurity,10 which may be reinforced in group situations. Attention to people’s self-defined needs and access to comprehensive welfare support payments might be as or more important in improving self-management than programs based on psychological outcomes such as self-efficacy.

The relevance of patients’ existing work and adaptation deserves more prominence in the design of self-management programs. We know from the comprehensive research within the sociology of health and illness that being diagnosed with a long-term condition has important facets, including a search for meaning and legitimacy, a renegotiation of self in everyday life and a need for access to material and social resources. It is also clear that patients who participate in self-management interventions bring with them existing ways of managing.11 The extent to which programs like the EPP fit with existing ways of managing are important in determining whether patients will accept them.11

Reflection on a failure to engage on these terms requires consideration when devising self-management interventions. This includes an assessment of the meaning of the disease to the person, the timing and the stage in a person’s illness career and the fit with people’s prior beliefs and lifestyles.12 Arguably, the focus on the introspection of the individual “activated” or “expert” patient threatens to exclude from consideration the role played by significant others, family members, social networks and resources, including those to be found on the Internet, in facilitating support.13

A final consideration is the extent to which different approaches to self-management support need to be considered in the light of limitations to the current patient-focused approaches to self-management support. We suggest a different focus may be required. Patients with long-term conditions already have relationships with clinicians and services. We have suggested elsewhere the need for self-management interventions to focus on three levels: the patient, the organisation, and the health professional.14 Augmenting and modifying what patients already do to manage their health and illness may have little impact if clinicians are not ready to engage patients in a shared approach to care, supported by the wider context of the health service in which they work, and without considering the access patients already have to social and material resources in their everyday lives.