What is patient empowerment? Over 250 participants discussed this question at the first European Conference on Patient Empowerment, recently held in Copenhagen, Denmark, by the European Network on Patient Empowerment (ENOPE 2012). The conference was convened under the auspices of the Danish Presidency of the European Union (EU), and organised by the WHO Regional Office for Europe, Denmark’s Ministry of Health, the Danish Committee for Health Education, the Caerum Foundation of Switzerland, and the English Expert Patient’s group. ENOPE 2012 co-organiser Ilona Kickbusch says that “patient empowerment is simply a process to help people gain control, which includes people taking the initiative, solving problems, and making decisions, and can be applied to different settings in health and social care, and self management”. Speakers argued that the traditional, paternalistic approach to patient care tends to ignore personal preferences, and creates dependency—there needs to be a shift towards patient-centred care.
The aim of the conference, attended by patients, public health experts, European ministry of health officials, and a handful of doctors, was to share experiences on different aspects of patient empowerment. These include health literacy, chronic disease self-management, and the role of technology. Empowerment is also about respecting patients’ rights and voice. Participants advocated for more patient involvement in designing national policies, to make health systems more user friendly and information more accessible. Outcome Measures in Rheumatoid Arthritis Clinical Trials (OMERACT) is an international network which has involved patients in improving disease outcome measures. The experiences of people living with HIV/AIDS are also an example of constructive, if historically hard-fought, patient-policy engagement.
Critics worry that the proposed shifting of power, a concept in itself potentially threatening to medical professionals, could abrogate governments’ responsibilities to fund health systems sufficiently to manage the growing burden of chronic disease. Implementation of health-literacy programmes and promotion of self-managed care both face huge practical challenges, including how to reach the most vulnerable groups. The reality is that doctors have limited consultation time and resources, and not all patients can, or want to be empowered. Robert Johnstone (of the International Alliance of Patients’ Organization) says that “doctors should get down from their pedestals, but patients must get up from their knees.” Yet he adds: “empowerment is not about trying to wrest power from the doctors, it is essentially helping people lead more proactive and fulfilling lives.”
In chronic-disease management, speakers agreed that we cannot afford not to self empower. Cardiovascular diseases, cancer, diabetes, obesity, and chronic respiratory diseases cause an estimated 77% of the disease burden in Europe as measured by disability-adjusted life years. “In countries such as China and India, health systems will only be able to cope with the onslaught of chronic disease with patient empowerment”, says Kickbusch. Although this will never substitute professional acute care, by learning to self manage, people with chronic diseases are more likely to remain integrated into society and the workforce. Programmes on chronic disease self management support individuals to gain confidence and acquire the skills to recognise warning symptoms, take medication, and decide the treatment that is best suited to them. However, evaluation of these programmes on a larger scale, and international evidence based guidelines for self-care, are urgently awaited.
High-level political commitment for patient empowerment is forthcoming. On her first day back from maternity leave, Astrid Kaag, the Danish Minister of Health, gave the conference’s opening remarks and announced that she was hosting an informal meeting of EU health ministers to discuss more patient-centred health systems. The WHO Regional Office for Europe has also embedded patient empowerment in a new European health policy, Health 2020, to be adopted later this year.
Virtually all people are patients at some point in their lives. Improving a person’s ability to understand and manage his or her own health and disease, negotiate with different cadres of health professionals, and navigate the complexities of health systems is crucial to achieving better health outcomes. ENOPE 2012, and the political commitment it fostered, is most welcome. However, empowerment is a process for the individual and all those who might advocate for it. Of all the challenges ahead, starting a dialogue directly with medical professionals on patient empowerment seems the critical next step.
From: The Lancet. Read full article here.