PowerPoint Presentation

12 May 20159th European Patients Rights DayNicola Bedlington EPF Secretary General Prevention and innovation FOR SUSTAINABLE HEALTH SYSTEMS@NABedlington@eupatientsforum

1EPF and what we stand forPrevention a key tenet of sustainability of healthcareInnovation and the role of patientsPatient Empowerment as a way forward

Presentation

European Patients ForumUmbrella organisationActive since 2003Independent & non-governmentalEU patients voiceOur members 64 patients groupsDisease-specific EU & national coalitionsOur visionAll patients in the EU have equitable access to high-quality, patient-centred health and social care

Who is EPF?

3

Investment needed across board not divisive

EPFs focus: secondary and tertiary prevention

Member of a new EU Coalition on prevention (EPHA)Prevention a key tenet PreventionHealth promotion One continuum

Work on nutrition for patientsSupport for our members workPartner in PISCE EU self-care projectChronic disease management

No contradiction between prevention, health promotion and patient centred chronic disease management part of one continuum Investment needed across board not divisiveEPFs focus on secondary and tertiary preventionEx. Work on nutrition for patientsSupport for our members work Women and Mens HealthPartner in PISCE EU self-care projectMember of a new EU Coalition on Prevention to be ran by EPHA

4Prevention strategies

Inherent to the equity and access agenda - social determinants of healthOften beyond health policy per seBlame and shame game

Rights based approach and European Social Model

Prevention the new black ?

RegulationEducationCultureIndividual and organisational behaviourComplex and Multifacetedits the patients fault that she got sick and she should pay

BanalSimplisticDiscriminatoryPrevention strategies complex and multifaceted-Blend of regulation, education, individual and organisational behaviour and cultureInherent to the equity and access agenda - social determinants of healthOften beyond health policy per seWe cannot get into a blame and shame game.. its the patients fault that she got sick and she should payBanal, simplistic, discriminatory -Contrary to a rights based approach and European Social Model

5Innovation in all its guisesPriority medicines report

Value Based InnovationPublic Private PartnershipsRedesigning of the Regulatory SystemNew pricing and reimbursement mechanisms Real life data and learning from practiceModels for Stakeholder Involvement including patients and citizensPatient-centred innovation

Priority-setting for research Better alignment of innovation with real needsInnovation that is important for patients Need to involve patient throughout the innovation chainBetter quality research resultsStrengthened trust and acceptance of researchCo-design research/patient-centred clinical trials, pricing and reimbursement decisions1: Innovation that is important for patients: Rationale: Priority-setting for research (patients identified needs, preferences)Patients focus on issues that researchers, companies or regulators may not identify as important

BENEFITS: Patients priorities for research are often different better alignment of innovation with real needs contributes to quality of life and health outcomes and value for health systems!

Need to involve patients throughout the innovation chain: Rationale: Advances in medicine are only possible with the voluntary participation of patients: Patients have a moral right to be involved in how research is developed, managed and evaluated. Broader/different perspective (patients experiential knowledge, patient expertise) Involve patients throughout the innovation chain: from priority-setting for research , to co-designing and participating in the assessment of clinical trials; to Cost-benefit and effectiveness evaluation (through HTA), to Pricing & reimbursement decisions .

BENEFITS: Involvement also leads to better quality research resultsStrengthen the trust and acceptance of research Produce results that can be used to effectively improve practice in health care for the benefit of the patients.

7Strong evidence base of the benefits of patient involvementBetter health outcomesBetter patients satisfactionCost-effectivenessPotential of patient empowerment: Info /Health literacyDialogue with Health ProfessionalsSelf Management

Patients Access and EmpowermentPatients as part of the solution8Key aspects of empowerment Patient

Professional

Adapted from EMPATHiE project Organisation

Culture

Social context

Political context

Health literacyInformation, ICT tools, system factorsSelf-managementSkills, behaviours, self-efficacy, psychological-emotional support Shared decision-makingRelationshipDecision aidsCommunicationHCP skills, attitudes Health literacyInformation

Self-management

Shareddecision-making

Empowering PAtients in Their Health management In Europe EMPATHIE StudyOngoing study final report Sept 2014

Micro level:Health literacy: providing information, group information sessionsSelf management: technical skills, behavioural change support, self-efficacy interventions, emotional and psychological supportShared treatment decision-making: multidisciplinary teams, communication skills, patient-professional relationship interventions, decision aids

Meso level: Virtual communitiesCurricula modelsIncentive-based systemsMonitoring performances

Macro levelPatient-rights lawsNormative standardsMonitoring performances

9Raise awareness at national and EU level

Patients prescribe 5 Es for sustainable health

Launch conference on May 2015Patient Empowerment CampaignEducation [Information/Health literacy]Expertise [Self-management]Equality [Shared decision-making with HCPs]Experience [Collective involvement]Engagement [Involvement in healthcare design]E5 =OBJECTIVE: NEED FOR ACTION

What does PE really mean to patients?How to measure empowerment?Advocacy to integrate PE in EU health systems and HSPAShare experience and expertiseThe critical role of patients!

MESSAGES

We are more than our disease!Empowered patients are an asset to societyInfo to patients & Health literacyPatients-Health Professionals relationshipSelf-ManagementSelf-Management

10Prevention is a key tenet for sustainability of health systems, but not an easy fix complex, multifaceted

Patients are part of the solution towards sustainability of health systems

We need to strive for the balance between innovation and solidarity and together, create a trusted, enabling environment to move forward

Conclusions

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