1. Cross-border healthcare and the perspective of patients Hearing on Cross-border healthcare systems 29 February 2016, Committee of the Regions, Brussels Kaisa Immonen-Charalambous Director of Policy, European Patients' Forum

2.  Independent, non-governmental umbrella organisation set up in 2003  65 member organisations – national umbrellas and EU-level disease-specific patient organisations What is EPF ? Vision: All patients in the EU have equitable access to high quality, patient-centred health and social care Mission: to ensure that the patient community drives policies that enable positive changes for patients to become equal citizens

3. Background on cross-border healthcare Long engagement with the Directive during “legislative journey”, work with EU Institutions and stakeholders EPF Guide & Recommendations 2013-2014 Series of regional seminars 2015 – 6 national mini-workshops Informal network of patient representatives 2 July 2015 – Conference in Brussels Summary report (March 2015) 2008 2011 2012 2013 2014 2015 EPF position paper (Q1/2016)

4. 2013: Brussels 2014: Athens Ljubljana Tallinn 2015: national workshops Zagreb Madrid Warsaw Sofia Dublin Bucharest EPF regional conferences & Workshops

5. General feedback from EPF events Not yet a lot of practical experience among patients who attended the events Uneven implementation by MS – little involvement of patient organisations Low awareness Potential benefits – patients’ ability to exercise of their rights, transparency… Key concerns: equity, quality of information, safety & quality of care

6. The “home” system is complex Patients often have to “fight the system” to get what they need Health/social system is difficult to navigate, even for well-informed patients...... let alone those with low health literacy Patients face “a labyrinth of confusing, sometimes insufficient and sometimes too detailed information” Cross-border healthcare adds another layer of complexity to this picture

7. Priority areas

8. Equity of Access Can accelerate access – faster treatment, better treatment Financial barriers seen as major threat to equity Barriers in access also seen within countries Transparency will lead to greater awareness of gaps “Patients in poorer countries will not be able to afford to access cross-border healthcare in richer countries” – Patient, Greece “We intend to examine our “basket of benefits” and compare it with other countries to identify what our patients need, and we will push the authorities to address any important gaps.” – Patient, Latvia

9. Information needs Transparency: potential for patient & community empowerment Knowing your rights and how to make use of them But information needs are complex – provision patchy, not geared to patients’ needs Patient organisations can play a powerful role “We have a lot of work to do in terms of basic information to patients about their rights … very little is known about these at the moment, so we need to rectify this.” – Patient, Cyprus “The national patient association can speak with one voice at the political level, but it is also important that every patient organisation interacts with the NCP.” – Patient, Slovenia

10. Quality and safety Patients need to be able to trust that treatment is safe and good quality Challenge re: complexity of guidelines Continuity of care is a patient safety issue Complaints & redress mechanisms need to be transparent ERNS have potential to improve quality “The project to create ERNs is the best possible answer to Euroscepticism.” – Patient, Slovakia “The Directive has highlighted that our countries are not as similar as we would like to think: for example, we have been talking about quality and safety standards as if every Member State has them…” – Patient, Estonia

11. THE PATIENT JOURNEY

12. The patient journey ? ? ? ? ? ? When deciding: enabling trust After returning: continuity and improvement Before leaving: mitigating risks During stay: dealing with the unexpected

13. Key messages from the patients More information provided early on = better Total cost implications Patients’ rights What information/documents needed Communication issues Whom to turn for help / emergencies Who is responsible for me, my safety etc. ?  Need for practical step-by-step guides, checklists  Harmonisation of procedures, document formats  Patient organisations can help – both patients and the NCP

14. RECOMMENDATIONS

15. Equity of access Impact assessment of the Directive on equity of access – positive or negative Collect data on treatment costs Collect data on treatments that are not authorised/available in certain MS Mechanisms for providing financial assistance for patients based on need – Implementation of prior notification and direct cross-border payments – Explore other solutions, links with social security system… – Identify and share practices and solutions for access found in different Member States

16. Quality and safety of care Information for patients on quality and safety : – Lay-friendly, easy to understand – Allowing for meaningful comparisons More convergence of standards & guidelines Benchmarks / key indicators for monitoring quality Patient-centredness as key dimension of quality  identification and sharing of good practices & transferability Implement patients’ free & timely access to their medical records (not only in cross-border context)

17. National Contact Points Standardised templates across EU for all forms EU-level guidelines on what information /how to provide Guidelines “for patients” on how to interpret quality information Information ideally at a “one-stop” portal at EU level Links to existing resources (e.g. medicines portals, clinical trials….) User-test the information but also other services, website… Common SOP/performance criteria for NCPs

18. The “Ideal NCP Checklist” Result of brainstorming and group discussions in all regional & national seminars Recommendations in four main areas: Fundamental principles Accessibility & visibility Operational Information for patients

19. More information Summary report from regional events (March 2015) – “Ideal NCP checklist” – “Patient journey map” EPF report from Brussels conference (July 2015) Guidance document on the Directive / recommendations for implementation (2012) EPF position paper 2015/2016 – forthcoming www.eu-patient.eu/whatwedo/Policy/Patients- Mobility/ Patient Empowerment Campaign

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