1 / 36

6 th European Health Forum

6 th European Health Forum. Gastein Austria 2 October 2003. The Informed Patient Project : European Policy Requirements. Prof. Don E. Detmer, M.D., M.A., FAAAS, FACMI, FACS, FRSM Dennis Gillings Professor of Health Management & Director, Cambridge University Health

oya
Download Presentation

6 th European Health Forum

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. 6th European Health Forum Gastein Austria 2 October 2003

  2. The Informed Patient Project: European Policy Requirements Prof. Don E. Detmer, M.D., M.A., FAAAS, FACMI, FACS, FRSM Dennis Gillings Professor of Health Management & Director, Cambridge University Health University of Cambridge; Prof. Medical Education University of Virginia

  3. Cambridge University Health Team Prof. Don Detmer, Peter Singleton, Dr. Alison MacLeod, Dr. Suzanne Wait, Marie Taylor, & Jolyon Ridgwell With our thanks to the many experts whosupported us in the Panels & Conference Supported by • Johnson & Johnson • the Nuffield Trust

  4. Eduardo Pisani • Paul de Raeve • Theo Raynor • Phil Riley • Brian Rogers • Francoise Salama • Mark Sampson • David Sharp • Helen Shaw • Jeffrey Sturchio • Philippe Swennen • Octavi Quintana Trias • Mike Tremblay • Hannu Vanhanen • Maurice Wagner • Stephen Withers • Alexandra Wyke Stakeholder Experts - 58 • Martin Anderson • Björn Beermann • Nils Behrndt • Adrian von Bellen • Pascale Blaes • Reiner Brettenthaler • Peter Brosch • John Copeland • James Copping • Angela Coulter • Vincenzo Costigliola • Gunter Danner • Linda Davidson • Anna Donald • Fibi Duke • Anne-Marie Felton • Livio Garattini • Tony Garlick • Flora Giorgio • Michael Griffiths Sunjai Gupta Veele Hermans Ian Hodgson Ton Hoek Richard Horne Kees de Joncheere Sheila Kerr Daniel Klein Jorma Koskinen Philippe Lenoir Jeffrey Levett Sophie Leyman Graham Lister Christine Marking Jacques Mascaro Rod Mitchell Mie Moerenhout Lyndsay Mountford Eileen Neilson Gabriele Nigemeier Judith Oulton

  5. Cambridge ConsensusConference Jim AppleyardMary BakerE. Andrew BalasAbraão CarvalhoJames CoppingAngela CoulterDon DetmerRodney ElgieChristine HancockJane HenneyKeith KrzywickiGraham ListerChristine MarkingHildrun SundsethEle VisserStephen Withers

  6. Contents of Presentation • The Issues & Key Stakeholders • The ‘Informed Patient’ Study • Five Stakeholder Panels – Nov 2002 • Cambridge Consensus Conference – Dec 2002 • Findings & Recommendations • Conflicts • Areas Needing Research • CUH Recommendations

  7. The Issues • Patients want information & accountability. • Aging populations & more chronic care require active patient involvement. • Medical knowledge & treatment increasingly complex. • Models of professionalism are evolving. • From Parental to Collaborative • Timeliness: EU Policy under discussion • EU Parliament rejected Commission recommendations • Pilot only for three disease areas

  8. Objectives of the ‘Informed Patient’ Study • Identify Goals for Health Information & Knowledge Support • Identify & Prioritise Key Issues • Consider an EU Policy Framework • Make Recommendations

  9. Existing Work External Expertise Current Opinion & Ideas LiteratureSurvey Five Stake-HolderExpert Panels Initial Findings Cambridge Consensus Conference Final Report Briefing Notes & Topics Notes & Further References Nov 2002 Dec2002 Feb2003 ‘Informed Patient’ Study Process Comment & Recommendations

  10. Information Channels Push Interactive Pull Internet TV SoapsDocumentaries ClinicalConsultation Library/Books Booklets PatientGroups PressArticles On-lineConsultation Leaflets/Posters Leaflets Increasing bandwidth HealthEducation PressAdvertisements TV/RadioAdvertising AWARENESS ONLY (bandwidth too limited) BillboardPosters

  11. The Benefits of the Informed Patient The Evidence Better informed patients are: • Less anxious • Treatment starts earlier • More satisfied & litigate less • Follow advice better • Lower risk interventions are selected • Healthcare costs drop through more self-management & a more efficient use of resources - “The Informed Patient” Study - 2003

  12. Stakeholder Panels: • Patients & Patient Advocacy Groups • Payers (Insurers, Employers) • Pharmaceuticals & Pipeline of Suppliers • Policy Makers (Politicians & Regulators) • Professionals & Related Providers plus Academics & Media/PR

  13. Five Key Messages from Expert Panels • All information, regardless of source, has potential bias & deserves scrutiny. • Policy discussions must distinguish between DTCA & other types of information provision to get meaningful policies. • Trust & collaboration amongst players is key • Including pharmaceutical industry if objectives are to be met.

  14. Five Key Messages from Expert Panels • A constant challenge is to find an appropriate representative of “patients” to take part in policy discussions, e.g., most patient groups are specific to one condition &/or culture. • Regulatory mechanisms should be implemented at the European level to ensure the quality of all information. • Caregivers & the informal agents in information delivery (‘infomediaries’) must be included to assure relevant range of content.

  15. Cambridge Consensus Conference Recommendation:Create EU Information Framework for the Future • Support Implementation for Patients/ Caregivers, Citizens & Health Professionals by: • Coordinating Efforts of Suppliers of Information • Offering Leadership & Education

  16. Cambridge Consensus ConferenceThe EU Framework for the Future:Policy & Programme Goals • Involve patients & carers in healthcare decisions • Increase patient capacity for informed decision-making • Teach patient self-care & family care • Improve patient awareness of treatment options • Explain costs & possible outcomes of treatment options • Facilitate public engagement in improving health, healthcare & outcomes • Develop & implement performance improvements

  17. Objectives of The EU Framework for the Future • Assure Quality Information • Support Decision-making • Improve Care Management • Accommodate New Information & Communications Technologies

  18. Goals: Assure Patient Information • Timely & On-going • Patients need different types of information at different points. • Relevant (language/culture, lifestyle, interests) • Significant cultural differences across Europe affects what patients expect. • Patients should be involved in design of information provision, so it addresses their needs.

  19. Goals: Support Decision-making • Information for Patients/Caregivers & Health Professionals • High Quality • Transparent - Understandable • Reliable (Evidence-based) • Accessible & “Just-in-time” • at point of care • time of decision • Right format • Information needs to be ‘layered’ to ensure accessibility – one size does not fit all.

  20. Goals: Improve Care Management • Care Processes • Improve access for those most at risk • Treat early • Avoid over-treatment • Integrate & Support care processes

  21. Goals: Info & Knowledge Support • Accommodate new information & communications technologies • Internet • Digital TV • Home monitoring • PDAs • Others

  22. Four Recommendations • Create The EU Framework for the Future • Convene key stakeholder groups to develop initiatives of the Statement • Support Implementation for Patients/Citizens • Focus EU/member states & private sector on quality, accessibility, & availability of structured information for patients/citizens

  23. Four Recommendations • Co-ordinate the Suppliers of Information • Using agreed standards, promote effective provision of quality information. • Offer Leadership & Education • Provide critical support to patient health education & continued professional development.

  24. Project Conclusion • The “Informed Patient” EU Framework of Policies & Programmes will: • Involve patients & carers in healthcare decisions • Increase capacity for informed decision-making • Teach self-care & family care • Improve awareness of treatment options • Explain costs & possible outcomes of treatment options • Facilitate public engagement in improving health, healthcare & outcomes • Develop & implement performance • improvements

  25. Full Report www.jims.cam.ac.uk/research/health/tip/tip_f.html

  26. Resolving Conflicts to Assure Research & Policy Movement • Conflict, Chaos & Cooperation Abound • Patients/patient advocates gaining voice • Regulators / Professionals vs. Pharmas / Suppliers • Research Needs • Range of information needed by patients across EU • Computer-based decision support for Pts & Health Professionals within Computer-based Health Records • Policy Needs • Regulatory consistency on advertising for OTC & prescriptions drugs • Greater detailed information on drugs from pharmaceutical firms • DTCA policy

  27. Human Beings: Creatures made at the end of the week when God was tired. - Mark Twain

  28. A Second Phase Policy Action Plan Is Needed for 2004-7 CUH recommends some next steps.

  29. The Panel & Conference (& others) set the general direction of travel, but when will we agree on a detailed plan to get us there?

  30. CUH Conclusions: Status Today • While all stakeholder groups must be involved: • Large cultural differences exist across Europe & within countries. • The Internet only plays a small role in meeting overall patient information needs. • Too little trust exists amongst policy-makers, professionals, consumers, the media, and industry for rapid progress and shared governance.

  31. CUH Action Plan: • EU-funded European Initiative to Construct The EU Framework for the Future • A Web-based Information & Communications Network • Explore best avenues for further development • Share experience • Capture best practices evidence • Develop a Formal Research Agenda • Create Co-operative Information Campaigns

  32. I. An EU-funded European Initiative to Construct The EU Framework for the Future A significant initiative is needed now to gain wide experience & assure a range of benefits, especially consistent quality standards.

  33. II. Creation of a Web-based Health Information & Communications Network The Network must be running by 2005. • Role: Monitor experience amongst key stakeholder groups across member states & localities throughout Europe

  34. III. Formal EU ‘Informed Patient’ Research Agenda A formal EU research agenda is  essential by 2005 to coordinate investigative projects aimed at best practices consistent with future needs • Public – Private? • EU Funded?

  35. IV. Co-operative Information Campaigns by 2004 Twenty-four Co-operative “Informed Patient” Campaigns between Governments & Industry involving Patients around Europe

  36. Thank You & Best Wishes. The First Wealth is Health. - Emerson

More Related