Kaisa Immonen-Charalambous Senior Policy Adviser, European Patients’ Forum

1. Kaisa Immonen-Charalambous Senior Policy Adviser, European Patients’ Forum The Belgian strategic plan for implementing healthcare innovations for chronic diseases “Patient engagement and empowerment” 2 April 2014

2. VISION: All patients with chronic and/or lifelong conditions have access to high quality, patient- centred, equitable health and social care. MISSION: to ensure that the patient community drives policies and programmes that affect patients’ lives to bring changes empowering them to be equal citizens in the EU 62 member organisations; non-disease specific – issues that are important for all patients • Who are EPF?

3. The patient’s role is undergoing a transformation : from passive recipient to active and equal partner • Moves towards “patient-centred” healthcare • Rise of patient advocates, “e”-patients… • Health systems need to change – chronic disease, ageing, technology, financial constraints – sustainability challenge • Everyone agrees: patient empowerment = good… … BUT do we see in the same way? … How to achieve it? • Why patient empowerment?

4. Impact of illness is multiple and compounded: physical, psychological, emotional, social, financial. Specific vulnerabilities: • dependence on timely access to safe, high quality care & support; reduced or inability to work – loss of income, risk of poverty; • direct and indirect costs of illness, catastrophic expenditures; • discrimination and stigma. Chronic disease is often a direct cause of health inequalities for patients and their families • The burden of chronic disease

5. One family: 40+ contacts Psychologist Pharmacist Specialist Hospital & health system Neighbours Personal assistance Physio GP Spouse Social insurance system Social network Friends Siblings Medicines Relatives Equipment Home adaptations Pre-school Housing Special school School system Other School nurse Employer Colleagues

6. “Patients’ perspective on chronic diseases is unique: patients live with their disease, learn to manage it, and to navigate the health system to get the right care. In addition, chronic diseases impact many areas of patients’ lives, including workplace, family and social interactions. This is why we believe patients play a key role in identifying service needs and ensuring that strategies to address chronic disease are effective in fostering high quality and sustainability of healthcare, and improved quality of life.” - EPF response to EC consultation on the Chronic Disease Reflection Process, May 2012 • Patients = part of the solution

7. From disease-centred to needs-based approach to chronic care: Patient = “person with a set of needs, along different dimensions, in more or less complex and individually specific combination, which are prolonged or permanent and evolve over time.” Care close to community – in the least “medicalised” environment that is appropriate • The Belgian vision for chronic care

8. Ticks several patient “boxes” at first glance: • Multi-disciplinary teams – patient at the centre • Medical services integrate with social and community services • Recognition of family members and carers • Self-management support • Patient participating in care and decision-making Comments on specific gaps and concerns … • The Belgian plan for chronic care

9. Self-empowerment: “patients accept responsibility to manage their own conditions and are encouraged to solve their own problems with information, not orders, from professionals.” From paternalistic model (doctor makes the decisions)  "autonomous“ model (patient makes the decisions, doctor provides information). “Responsibility” is problematic considering power balance between patients and system EPF: shared/collaborative decision-making (a partnership) • Limited notion of empowerment

10. Patient empowerment = a process that helps patients gain control over their lives, increasing their capacity to act on issues that they themselves define as important; a process through which patients individually and collectively are able to express their needs, present their concerns, devise strategies for involvement in decision-making, and take action to meet those needs. (Adapted from JA-PaSQ, 2012) • Vision: patients as “co-producers” of well-being and integral actors in the health system • Cannot be imposed top-down  needs changes at all levels, incl. bottom-up support tools & enabling environment • What it is NOT: consumerization; burdening; blame • EPF definition of empowerment

11. Need for a comprehensive information strategy – within and outside health system • About all aspects of health including • Health promotion/lifestyles • Diagnoses, symptoms • Treatment options, evidence-base • Safety and quality • Designed by + for patients • Quality criteria • Meeting diverse information needs and health literacy levels • Information for informed decisions “MUSHROOMS BEAT CANCER” (Headline, Daily Mail) ???

12. Navigating the health “maze” is challenging – even for people with high education • HL is more than information: capacity to access, evaluate and relate information to one’s own situation and take actions • Needed to empower patients & for people to make better health decisions in all areas of everyday life! • Health literacy is not only an indiviual problem but a systems challenge • Health literacy: a system challenge

13. “Patients take an active role in activities or decisions that will have consequences for the patient community, because of their specific knowledge and relevant experience as patients. The involvement must be planned, appropriately resourced, carried out, and evaluated as to its outcomes, impact and the process itself, according to the values and purposes of all participants.” (Adapted from EPF project “Value+”, 2009) • Individually and collectively through patient organisations • Recognition that patients = experts with a unique perspective and experiential knowledge • Experience should be used to effect improvements in care • Meaningful patient involvement

14. Patients with chronic diseases have common needs: empowerment, information, navigation, care coordination, access, encounters with health professionals and bureaucracy… • Only the patient sees the whole journey • Patient involvement is key to developing services so they really meet the needs of (all) patients • Make care “truly” patient-centred: involve patients in assessing needs, planning, designing, implementation, continuous evaluation & improvement ! • Involve patient organisations at provider and policy level. • Co-design from the patient perspective

15. Evaluate, evaluate, evaluate… Patient-centredness as dimension of Quality of Care • How do you know if the system is working for patients/families: ask them! • Do current indicators accurately reflect patients’ priorities? • Are you measuring the right things? • Patient experience =/= satisfaction surveys • Need for qualitative information • Continuous feedback loop – followed by ACTION to improve services

16. Empowered patients seen as a threat by some professionals • Balance of power needs to change – professionals need to accept this • Recognise patients as experts in their own care and condition • Focus on education and training for professionals • Patient involvement a “sine qua non” of health system design. • Culture change!