Kaisa Immonen-Charalambous Senior Policy Adviser, European Patients’ Forum EPF Conference on Patient Empowerment: Conference document Patient Empowerment conference & campaign Brussels, 5 February 2015

1. Possible conference outputs – Conference deliverable – call for action/resolution… – (Draft) Roadmap for action – “Charter on patient empowerment” – campaign deliverable 2. Priority action areas (from EMPATHiE etc.) – Information / health literacy – Patient-professional relationship – Self-management – Other 3. Next steps & roles of stakeholders – Process of development, endorsement, adoption… Overview

Awareness-raising, political – endorsed by partner organisations jointly Emphasis on taking forward the recommendations from EMPATHiE Contains a strong message about PE mainly targeted at decision- makers at different levels – EC/Parliament – Member States Key message: PE is a priority for ALL key stakeholder groups – We commit ourselves to taking action together – We ask action from policy-makers Disseminated after the conference – in form of leaflet + electronically For media to generate visibility for the conference & campaign Conference Call for action/Resolution Concrete conference output, patient-led, multi-stakeholder

Turns the political principles into a number of concrete actions Recommendations for stakeholders and policy-makers at different levels – European Commission – European Parliament – Member States, regions – Stakeholders – professionals, patient groups, payers, health/hospital managers, researchers, industry, etc. Feasible to agree in time for the conference? If not, develop this in draft and finalise during the campaign with stakeholder (your) input  endorsement Roadmap for action Potential concrete conference output / developed during campaign, patient-led, multi-stakeholder

Needs time to develop a meaningful document endorsed by patient communities Contains the most important messages, e.g. “10 principles of patient empowerment” – what matters to patients Adopted and owned by patient communities across EU – EPF extended membership – as advocacy tool Other stakeholders can endorse via online tool Charter for patient empowerment Developed during the campaign, patient-led

Ideas from EMPATHIE Action areas proposed in EMPATHIE scenarios 1. Information/health literacy  Common standards for providing information on healthcare quality/safety (CBHC)  Quality criteria for health-related information  Review of implementation of existing EU legislation (e.g. national portals) -> gap analysis  EU strategy for health literacy “Existing quality checklists could be built on.” “Access to reliable information and health literacy requires representative collaboration between stakeholders and high quality standards.” “Current work to define and measure health literacy would provide a good basis.”

Ideas from EMPATHIE 2. Patient-professional relationship  Needs assessment from the patients’ perspective  Collect good practices of professional education (curriculum, patient involvement, etc.)  Agreement on common skill-set for patient-centred healthcare  Agreement on minimum training requirements “There are existing initiatives, e.g. health workforce planning and forecasting, that could link very well with this topic if given prioritisation.” “Attitudes and practices that tend to undermine patients' self-care efforts and inhibit them from participating won't change until training changes.” “Professional training is absolutely key to patient empowerment.”

Ideas from EMPATHIE 3. Self-management, including ITC  Common quality standards for e-/mHealth applications  Mapping/needs assessment: patients (empowerment), professionals (workload?) and MS (system burden) -> identify most added-value solutions  Agree approach to measure added value of e-/mHealth solutions  Sustainable, user-friendly resource to help people find the suitable health apps for them  Education resources/tools to support patients’ use of e-/mHealth “The issue is how to exploit the innovations in an effective way” “The new generation of patients will be highly IT literate, therefore investing in it is essential.” “Tools and gizmos should not be seen as THE answer to patient empowerment.”

Ideas from EMPATHIE 4. Other. – EU indicators for patient empowerment – Repository of good practices and tools at EU level – Model for transferability of good practices, building on EMPATHIE WP3 – Common definition of patient-centredness that can be used for comparative assessment (HSPA) – Promote implementation of (meaningful) feedback mechanisms for patients/families – Sustainable network on patient empowerment – “bottom-up action with top-down support “ “Much is developed and studied, but not everything is available. It would be a good, first step to learn from each other, make it transparent and available.” “This could be an important step in creating the necessary critical mass to get patient empowerment taken more seriously.” "if it is not a club of talk and talk and recommendations…”

Which type of document will work best for the conference? Process of development What role will you play as a representative of your stakeholder group? Who else should be involved (if anyone)? Process of adoption/endorsement? Next steps & roles of stakeholders

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