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Self-management in chronic diseases
We learnt from the EMPATHIE project that for person centred care to be meaningful the key lever for change from a passive recipient of paternalistic care to an active knowledgeable citizen is empowerment.
In health this means three interlinking components. Firstly, education. Health literacy is discussed in detail under the heading of ‘knowledge’ but while increased health literacy enables the citizen/patient to be a more effective active participant in their health management, education has to be two-way, something often overlooked by traditional-thinking healthcare professionals. Healthcare staff also need training in skills to promote rather than to inhibit empowerment, just as they need training in digital literacy (also dealt with under the ‘knowledge’ heading). There is now a huge literature on self-management in chronic diseases (mainly the ‘big three’ of diabetes, cardiac and circulatory disorders and respiratory diseases such as COPD and asthma). A review of systematic reviews in this area allows us to identify which approaches are most effective (see the PROSTEP project, completed 2018 and the current COMPAR-EU project, both funded by the European Commission).
The principle here is that those who have to live with a chronic condition are experts in their personal well-being, need health coaching rather than having their situation over-medicalised and are well aware that their quality of life encompasses much more than is defined by the symptoms of their condition(s).
EHFF is overseeing a three year project funded by the Robert Bosch Foundation to establish a European Centre for the empowerment of patients and communities
Citizen and professional relationships
If education and self-management skills are two pillars of patient empowerment, the third is joint decision-making.
From the literature and from experience, this is the least well-developed of these elements in healthcare practiced currently in Europe. There are isolated examples of excellent practice in this arena, but the fundamental issue here is a shift in the power balance and an acceptance by professionals that an educated patient is entitled to make choices, including not to have a treatment or to demand more information to allow them to agree decisions with their carers about their own health and healthcare. Key issues here are fostering mutual respect and understanding in the relationship and in professionals having confidence in their own abilities sufficient to allow them to adjust to a changed inter-personal dynamic, inevitably easier for a younger generation of professionals perhaps than for an older one.
European Patients Forum
A good example of the beneficial association of groups representing different patient interests across Europe, is our partner the European Patients Forum. EPF majors on all aspects of patient empowerment, reflecting the patient experience from a grass-roots level but also is active in policy areas such as patients’ rights.
Self-care and wellness promotion
A study funded by the European Commission (the PiSCE project) which was on promotion of self-care in minor conditions included EHFF on the steering committee (also see here). What we learnt was that cost benefit analysis in this field is extremely problematic. Nevertheless, national websites providing free information in the area, where they existed, were valued and were actively engaged with by citizens. Policy recommendations were part of the project deliverables. There are still considerable sensitivities around the sale of OTC (over the counter) pharmaceuticals, and of the role of pharmacists as first port of call for citizens with minor conditions, rather than primary care centres. An agreed definition of self-care is:
’A learned tool enabling people to maintain health and to cope with illness and disability. Along with better health literacy it also supports optimal and timely use of available health services while avoiding a total dependency upon them for minor ailments.’
Following completion of the project, after a year of discussion a new NGO, SCiE (self-care in Europe) was set up, based in Copenhagen, in June 2019.
Wellness promotion
Wellness promotion is both an extension of self-management (including use of eHealth) by health literate citizens and is in addition the remit of European Public Health resources. EHFF looks across to its partner DCHE for expertise here. As argued in our section on ‘a holistic approach to health’ promoting wellness requires looking wider than the healthcare system and needs ‘joined-up thinking’ within society and engagement between major players such as education and industry with the healthcare systems.
