"Patients prescribe E5 for sustainable health systems"
That's the tagline for a year-long patient-empowerment campaign launched in May by the European Patients Forum, a coalition of organizations representing 150 million patients.
The Europeans, and the British, too, are looking at empowerment as a financial imperative. And we should, too. Here's the problem: traditional healthcare systems were designed for infectious disease. Treatment fitting the disease was prescribed and managed by professionals while patients complied and were cured or died. That disease-focused model prevails but cannot sustain treatment of modern chronic conditions and aging populations where treatment needs differ, treatment options are complex, patients self-manage and live decades with their conditions.
Health Literacy: an aspect of empowerment
The campaign defines patient empowerment as a process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.” Heath literacy is considered an aspect of empowerment; it helps people gain control over their health and its determinants. Information and resources are considered tools for empowerment. If we consider information and services as tools for empowerment, how would we design them differently? What if the purpose of Informed Consent was to empower patient choice rather than legally protect providers?
The five “Es” of Empowerment:
• Education: patients can make informed decisions about their health if they are able to access all the relevant information, in an easily understandable format.
• Expertise: patients self-manage their condition every day so they have a unique expertise on healthcare which needs to be supported.
• Equality: patients need support to become equal partners with health professionals in the management of their condition.
• Experience: individual patients work with patient organizations to represent them, and channel their experience and collective voice.
• Engagement: patients need to be involved in designing more effective healthcare for all, and in research to deliver new and better treatments and services
Patient empowerment is a challenge for professionals, too
All the European stakeholders, including health professionals, agreed that a major barrier to achieving the five Es is health professionals' attitudes. This is not surprising, and it's likely the same in the US. Special knowledge has been a source of power and status for physicians for centuries. Health education curricula is defined but de-funded in most schools so patients often lack essential knowledge. Skills to collaborate with less knowledgeable patients as respected, equal partners with useful expertise are not developed in medical school. And there is never enough time.
Content analysis of US health literacy discourse suggests that here, as in Europe, professional attitudes inhibit patient empowerment. The term empowerment is rarely mentioned. Patients are described' as "difficult", "hard-to-reach" or "illiterate", with "inadequate" or "marginal" skills, who "fail" to comply or "just don't care". If empowering the patient was part of every treatment plan, how would we describe patients differently? What would we do differently?
Learn more about the Patient Empowerment Campaign here http://www.eu-patient.eu/campaign/PatientsprescribE/ .
Follow them at @PatientsprescribE