1. The Informed Patient An EU Framework for Action European Health Forum Gastein Peter Singleton Senior Associate, Cambridge University Health

2. TIP-2: The Informed Patient an EU Framework for Action Professor Don Detmer and Peter Singleton Senior Associates, Cambridge University Health

3. The Informed Patient (TIP) Project Expert Panels in November 2002 Cambridge Conference December 2002 First TIP Report – May 2003 Further meetings in London, Brussels, and Florence Dublin Conference (TIP-2) February 04 TIP-2 Report (EFA) – August 2004

4. Why change? Aging population & more chronic care Increasing complexity of medicine Patients increasingly want more information and accountability Changing models of professionalism So we need to: Change how we deliver and co-ordinate care Co-ordination through better information is critical

5. Will better information help? Choice Outcome Evidence Informing Information may not change behaviour, or may be misinterpreted Change in choices may not materially affect outcomes (or effects counterbalance) Change in outcomes may not be identifiable or measured; may be lost in other effects Research may not support information provided, so information is flawed; there may be no firm or clear evidence May be significant barriers to access

6. TIP-1: The Evidence Better informed patients are generally: More involved and follow advice better Less anxious – though some may be more so Select fewer or lower risk interventions Start treatment earlier More satisfied & litigate less Have lower healthcare costs through more self-management & a more efficient use of resources

7. TIP-1: The Evidence Current information provision is generally: Poor, unreadable, and badly targeted Fails to address patients’ real needs Inconsistent between localities Fails to support minority groups and cultural differences Often provided as an afterthought Rarely delivered as part of healthcare process and tailored to individual needs

8. TIP-1: Cambridge Conference Recommendations Create EU Information Framework Support Implementation for Patients/ Caregivers, Citizens & Health Professionals Coordinate efforts of Suppliers of Information Offer Leadership & Education

9. TIP-2 Conference Themes Promote health information as an issue Co-ordinated public health information campaigns Professional and public education Engaging media, private sector, and new EU states Promote evidence-based practice Enhance trust and quality of care

10. Public Communications & Engagement Education of Professionals & Public Research Agenda European Commission, Member State Governments, & Localities Formal Network Development The EU Framework for Action

11. EFA: Five main areas Involvement of European Commission, Member State governments, & Localities Public Communications and Engagement Education of public and professionals Research Agenda Formal Network Development

12. EU Framework Structure Within each area, we develop: Goals – objectives that need to be achieved Strategies – ways of achieving those goals Initial Actions – the first steps to effecting and implementing the strategies Instigators – those actors best placed to initiate the actions, possibly bringing together those capable of implementing those actions

13. Key Goals Higher standards for patient involvement and information provision across Europe Better health and health awareness among the public/better media reporting Communication skills for professionals Gathering evidence and promoting best practice

14. Priority Actions Bring together stakeholders to consider coordinated action (1b, 1c, 2a) Address professional education (2c,3a,3b,3c) Engage media in better reporting (2f,2g) Engage public at work and schools (2b, 2d, 2e) Improve PILs with medicines (1g,2h) Establish network and centre for best practice in health information provision (1d, 1f, 5)

15. Conclusions It is critical that policy-makers in EU institutions and member states recognise : –The need to involve the public more fully in their health and healthcare; –The crucial function that health information plays in effecting this; –How to deliver such information effectively over time and through as many channels as possible; –A coordinated framework of actions must be undertaken rapidly to improve the effectiveness of care delivery and to manage total healthcare costs

16. Thank you. Full Report at www.jims.cam.ac.uk/research/ health/tip/tip_f.html