“Managing healthcare costs: can patient safety be traded-off ?” 6 May 2015, Brussels

1. “Managing healthcare costs: can patient safety be traded-off?” 6 May 2015, Brussels Kaisa Immonen-Charalambous Senior Policy Adviser, European Patients’ Forum safety and quality of care: the patient perspective

2. Independent, non-governmental umbrella organisation set up in 2003 • OUR VISION: All patients in the EU have equitable access to high quality, patient-centred health and social care • About the European Patients’ Forum • OUR ROLE: United patients’ voice in EU health and social policy • OUR MEMBERS: disease-specific EU & national coalitions – 64 member organisations

3. EPF involvement in Patient Safety EC Patient Safety & Quality Working Group • EC Communication (2008) and • Council Recommendation (2009) • Input on the EU future agenda on quality EU legislation related to safety • Directive on patients’ rights in cross-border healthcare • Pharmacovigilance, falsified medicines • Medical devices, in vitro diagnostics EU Projects on patient safety • EUNetPas (2008-2011) • Joint Action PaSQ (2012-2015) Building partnerships and collaboration with WHO, health professionals, public health NGOs and other stakeholders

4. Patients are becoming more active and vocal • “Patient-centred” approaches to healthcare increasing • Patients  from passive recipients to active partners • Self-management • Shared decision-making • Integrated care • This requires a culture of openness, transparency and support for patients • Changing role of patients

5. Patients can help improve safety Safety = a key aspect of quality Patient-centredness = a key aspect of quality Individual patient’s experience of his/her healthcare “journey” = rich resource of information about gaps and failures in the system Need support and empowerment: • Information that is understandable • Health literacy skills • Professional who listen and encourage • Patient-friendly environment • Self-management support

6. “When I read through my medical record, I noticed two mistakes.” • Patient: the last “barrier” “When I received a new glucose monitor, I noticed the readings were not right. I noted all the readings comparing the old and new monitor … Finally the nurses agreed there was a problem with the new brand of monitors.” “If I can be working in partnership with clinicians I could have much more success at avoiding mistakes. Clinicians are full of good intentions and highly trained, but they are never going to be as committed to me and my health and wellbeing as I am.”

7. Joint Action PaSQ (2012-2015) • EU collaboration on patient safety 660+ good practices (clinical + organisational) now available to professionals and public through the PaSQ wiki platform 35 Exchange Mechanism events – experts from 20 EU MS 4 Safe Clinical Practices selected for implementation in healthcare organisations – 150 HCOs from 17 EU MS will implement these good practices for one year and assess their impact. • WHO Surgical Safety Checklist • Medication Reconciliation • Multimodal intervention to increase hand hygiene compliance • Paediatric Early Warning Scores

8. PaSQ: 660+ good practices

9. Good practice example • Denmark: The Patient Handbook • A patient’s guide to a safer hospital stay, co-designed with patients • Aims to support the participation of patients in their own treatment • Explains how to ask questions, what to ask about etc. • Contains practical information about the Danish healthcare system • “10 Good Advices” for patients on how to increase safety • Information about the different stages of hospital admission • Tools to control their medication and assess pain • Space for patients to write down notes and questions • 250.000+ copies distributed • English version online: • http://www.patientsikkerhed.dk/in-english/projects/patient-handbook.aspx • PASQ SCP ID 1006 – The Patient Handbook, Denmark

10. Good practice example • Medication safety information for patients • Madrid Health Service Medication Website: Patients can see key information on all marketed medicines • Personalised medicines plan, including photos of packaging, dosage of each and basic information • On-line consultations answered by professionals within 5 days • Information on labelling, package leaflets, how to correctly identify a product, how to use, how to store, how to dispose… • Evaluation showed improvements in patient outcomes • PaSQ SCP ID: 1023

11. Good practice example • Aims: improve patients’ knowledge and skills about their condition, quality of life, services use, adherence, lifestyle. Encourage patients to take control of their condition. • Peer to peer learning: patients train other patients – reaching 15,000+ patients – even wider reach through social networks • PASQ GOP ID 95 – Andalusian School of Public Healtj • Spain: “Patient academy” approach in Andalusia • Patient School at the Andalusian School of Public Health • Patients with chronic diseases (e.g. diabetes, asthma, COPD, fibromyalgia, heart failure, cancer… )

12. Many current practices focus on information provision (not “real” involvement) • Many things being done “on the ground” – but no real overview – often no evaluation • Emerging evidence base on (cost-)effectiveness of patient empowerment & involvement (e.g. EMPATHIE study) • Need for a more comprehensive approach at EU level • Need for patient empowerment “Safety for patients includes medicines/devices – patient safety & regulatory bodies need to talk to each other” “Healthcare practice & culture need to go beyond ‘patient-centred‘ to a real partnership with patients”

13. Key action areas • The informed patient (health literacy) • New professional skills, knowledge & attitudes (EU health workforce) • Self-management support (including) with technology • Transparency of quality and safety of care to patients and public • European strategy and action plan on patient empowerment • Common repository of good practices and tools • Development of common indicators  collection of comparable data • Research to fill gaps  improved evidence base • The EMPATHIE study (2014)

14. 2015: Launch survey on patients’ understanding of “quality” as part of HSPA approach 2015: Conference “Patients’ rights in cross-border healthcare” – 2nd July, Brussels 2016: Conference on “The patients’ role in patient safety” - launch process to develop “core competences” for patients and families in patient safety (CR 2009) including medication safety 2015-2016: Campaign & conference on patient empowerment – from 20 May 2015 to June 2016 – follow up on the EMPATHIE outcomes in a multi-stakeholder “bottom up” approach Continuing work with European Medicines Agency: medication errors, PIL, pharmacovigilance, etc. • Next steps for EPF

15. More information? EPF position paper on adherence & concordance Stakeholder consensus paper on health literacy Reports from EPF pan-EU series of regional workshops on cross-border healthcare EPF work on patient safety & quality of care EPF work on pharmacovigilance EMPATHIE final summary report: http://ec.europa.eu/health/patient_safety/docs/empathie_frep_en.pdf