1. PATIENTS FOR PRIMARY CARE – WHY WE CANNOT DO IT ALONE Anders Olauson, EPF President Agrenska Chairman The Future of Primary Care in Europe IV, Gothenborg, September 3-4 2012

2. subtitle Independent, non-governmental umbrella organisation set up in 2003 VISION: High-quality, patient- centred, equitable healthcare for all patients in the EU MISSION: To provide a strong and united patients’ voice –> Putting patients at the centre of EU health policy EPF About us 54 member organisations – 150 million patients with chronic conditions across the EU

3. subtitle Much of the patients’ care journey, and of their quality of life, depends on the quality of primary care Essential for prevention (primary and secondary) screening, diagnosis, care coordination, information to patients… Challenges facing healthcare among which demographic trends are affecting primary care. Our current healthcare system are not generally geared towards patients’ with chronic diseases’ needs: redesigning healthcare systems to ensure high quality chronic disease management It is essential to take into account the patient perspective to ensure we truly place the patients’ need at the centre of care Future of primary care

4. subtitle Patient involvement in health-related decision- making is a fundamental right … & a crucial element for the future of healthcare, and to provide patient-centered care Through our project Value+ we explored patient participation in EU health research, and developed the concept of meaningful patient involvement, along with indicators and tools to implement it. Patients experience in navigating health systems can help in identifying barriers and areas for improvement, as well as good practices. Meaningful patient involvement

5. subtitle Currently patients report they struggle to obtain the care they need Integration of care need to be vertical (between different levels within the whole healthcare system)– and horizontal (between health and social care) Primary care has a key role to play in integrating care and empowering patient to remain independent longer with sufficient support the needs of patients, their families and carers need to be truly at the centre Coordinated intervention between different actors of primary care is also essential for prevention & adherence intervention Coordination of care

6. subtitle Healthcare professionals are the first source of trusted information to patients But key mismatch in communication: patients report they want more than what healthcare professional give Information to patients Patients have a fundamental right to access high quality information about a variety of topic relating to their health condition and treatment – in a format that is accessible to them, at the time when they need it – one size does not fit all Core quality criteria developed at the EU pharmaceutical forum with input from patient organisations: a model to follow

7. subtitle Primary healthcare plays a central role in building patients’ health literacy patients, when informed, empowered and involved, are an asset to society…. & for healthcare professionals : moving from monologue to a dialogue, with truly productive discussion better health outcomes & sustainability of healthcare EPF calls for comprehensive strategy on information to patients at EU level that encompass health literacy Health literacy the capacity to obtain, interpret and understand health information; to make sound health decisions; and to navigate the health services.

8. subtitle  Healthcare providers have a key role to play in providing an enabling healthcare environment for the patients. Shared decision making: Moving from adherence to concordance: a patient- clinician interaction whereby both partner are in a therapeutic alliance Key role of patient and their organisations in identifying needs in terms of skills, competences, and continuing professional development ”Patient literacy” EPF calls on the EU institutions and member states to take into account the patients perspective in debates around planning in healthcare and skill needs of the health workforce

9. subtitle  Patient involvement and empowerment will become necessary with innovative form of care: e.g. Personalised medicines  Importance of ICT Technologies and eHealth to support care coordination, patient empowerment and shared decision- making  EPF’s projects in this area: Innovation and primary care led by EPF in collaboration with healthcare professionals organisations- focusing on user perception and acceptance of telehealth Setting real life telemedicine pilots in 9 European regions developing and deploying a basket of services in 11 European regions providing patients’ access to Electronic Health Records

10. subtitle An unprecedented collaboration: Patient organisations, health professionals, health tech experts, health NGOs, pharma industry Our starting points: Patients want and need more information but are unaware of research & their role in it. Patient advocates play a key role in providing information, but may lack education and training to participate in research Benefit for patients: understanding more about, and thus contributing to the multiple facets of evidence-based new medicine. EUPATI: a breakthrough model

11. subtitle What we aim to achieve: EUPATI Certificate Training Programme Patient Ambassadors in committees, HTA agencies, industry, regulatory bodies, academia etc Patient Journalists raising awareness Patient Trainers for patient communities and networks. 100 patient advocates 12.000 patient advocates 100.000 individuals EUPATI Educational Toolbox Educational tools for patient advocates (print, slide shows, eLearning, webinars, videos) for patient advocates EUPATI Internet Library Patients & lay public at large, e.g. on specific aspects of the development process of medicines for patients with low (health) literacy.

12. subtitle Primary care is bound to have a pivotal role for chronic disease management Patient empowerment and meaningful involvement are critical success factors in achieving the right changes to provide high quality, sustainable healthcare to patients, and to improve their quality of life Final Thoughts Patients are not cost drivers. They are an essential part of the solution: Patients have the experience, will and ability to contribute meaningfully to all health related decision making – whether individually or collectively.

13. THANK YOU FOR YOUR ATTENTION! More information: www.eu-patient.eu www.agrenska.se