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European Patients’ Forum’s
Perspective – Cross Border
  Healthcare and eHealth
    Nicola Bedlington, EPF Director
            17 March 2010
o   High quality, patient-centred
    equitable healthcare across the
    EU

o   Strong and united voice

o   Umbrella body of 42 European
    disease specific patients’
    organisations and national
    coalitions

o   150 million EU patients with
    chronic conditions
eHealth a priority for EPF

• Huge potential if appropriately harnessed
• Patient-centred disease management; patient -
  healthcare professional dialogue; personalised
  healthcare; cross border mobility; quality and
  continuity of care and patient safety,
• Sustainability of health systems
• Much EPF Policy and Programme activity on
  eHealth
• Important Spanish Presidency has identified
  eHealth as a priority
• eHealth governance is here to stay !!
Directive – Patients Rights in
Cross Border Healthcare
• Bedrock for eHealth
• Inherent to Commission original proposal
• Reinforced in European Parliament
• Weakened in December Compromise Text
  despite clear competence in eHealth
• Principles of quality and safety in healthcare
  June 2006 Council Conclusions
• Count on Spanish and future Presidencies to
  advance on this –strengthen text - reinforce
  comitology
EPF Activities on eHealth

• CALLIOPE
• RENEWING HEALTH
• CHAIN OF TRUST
• Electronic Health Records etc
• ICT as part of a comprehensive information to
  patients strategy
• Strong relationship with other eHealth
  stakeholders – and industry
Rationale behind EPF’s
engagement on eHealth
• Our members’ belief that eHealth solutions can
  only work if patients are involved meaningfully
  from inception to delivery
• Value + has provided a model on patient
  involvement - added value in EU projects
And policies......
• Exciting new development – eHealth
  governance
• eHealth Joint Action/Thematic Network
eHealth Governance-
Involvement of Stakeholders
• Fundamental to address some of the core
  challenges
• Bridging the gap between policy-makers and
  stakeholders
• Meeting the needs of users
• CONFIDENCE, ACCEPTANCE, ETHICAL
  ISSUES
• Channelling expertise and good practice
• Mobilising constituencies at all levels
Added Value-stakeholder
involvement

• Pharmaceutical Forum-Ministerial Conclusions
• EUNetPAS Joint Action on Patient Safety
• European Medicines Agency - patients and
  consumers working party
• EU Health Policy Forum

• eHealth Users Stakeholder Group
Conclusions and Way Forward

• Technologies to develop from needs - not the
  way round – user-led, societal
• EPF and other stakeholders -a strong and
  resourced strategic role in eHealth governance
  – same path to be followed at MS level
• Meaningful patient involvement in eHealth calls
  built into application and evaluation processes
• Quality of Life Indicators for evaluating
  technologies
• eHealth Literacy vital
More information

       www.eu-patient.eu
       info@eu-patient.eu




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Patient Perspectives on Healthcare in Europe

  • 1. European Patients’ Forum’s Perspective – Cross Border Healthcare and eHealth Nicola Bedlington, EPF Director 17 March 2010
  • 2. o High quality, patient-centred equitable healthcare across the EU o Strong and united voice o Umbrella body of 42 European disease specific patients’ organisations and national coalitions o 150 million EU patients with chronic conditions
  • 3. eHealth a priority for EPF • Huge potential if appropriately harnessed • Patient-centred disease management; patient - healthcare professional dialogue; personalised healthcare; cross border mobility; quality and continuity of care and patient safety, • Sustainability of health systems • Much EPF Policy and Programme activity on eHealth • Important Spanish Presidency has identified eHealth as a priority • eHealth governance is here to stay !!
  • 4. Directive – Patients Rights in Cross Border Healthcare • Bedrock for eHealth • Inherent to Commission original proposal • Reinforced in European Parliament • Weakened in December Compromise Text despite clear competence in eHealth • Principles of quality and safety in healthcare June 2006 Council Conclusions • Count on Spanish and future Presidencies to advance on this –strengthen text - reinforce comitology
  • 5. EPF Activities on eHealth • CALLIOPE • RENEWING HEALTH • CHAIN OF TRUST • Electronic Health Records etc • ICT as part of a comprehensive information to patients strategy • Strong relationship with other eHealth stakeholders – and industry
  • 6. Rationale behind EPF’s engagement on eHealth • Our members’ belief that eHealth solutions can only work if patients are involved meaningfully from inception to delivery • Value + has provided a model on patient involvement - added value in EU projects And policies...... • Exciting new development – eHealth governance • eHealth Joint Action/Thematic Network
  • 7. eHealth Governance- Involvement of Stakeholders • Fundamental to address some of the core challenges • Bridging the gap between policy-makers and stakeholders • Meeting the needs of users • CONFIDENCE, ACCEPTANCE, ETHICAL ISSUES • Channelling expertise and good practice • Mobilising constituencies at all levels
  • 8. Added Value-stakeholder involvement • Pharmaceutical Forum-Ministerial Conclusions • EUNetPAS Joint Action on Patient Safety • European Medicines Agency - patients and consumers working party • EU Health Policy Forum • eHealth Users Stakeholder Group
  • 9. Conclusions and Way Forward • Technologies to develop from needs - not the way round – user-led, societal • EPF and other stakeholders -a strong and resourced strategic role in eHealth governance – same path to be followed at MS level • Meaningful patient involvement in eHealth calls built into application and evaluation processes • Quality of Life Indicators for evaluating technologies • eHealth Literacy vital
  • 10. More information www.eu-patient.eu info@eu-patient.eu 10