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6th 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, FRSMDennis Gillings Professor of Health
Management &Director, Cambridge University Health
University of Cambridge;Prof. Medical Education
University of Virginia
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
Stakeholder Experts - 58Sunjai GuptaVeele Hermans Ian HodgsonTon HoekRichard HorneKees de JoncheereSheila KerrDaniel KleinJorma KoskinenPhilippe LenoirJeffrey LevettSophie LeymanGraham ListerChristine Marking Jacques MascaroRod MitchellMie MoerenhoutLyndsay MountfordEileen NeilsonGabriele NigemeierJudith Oulton
Martin AndersonBjörn BeermannNils BehrndtAdrian von BellenPascale BlaesReiner BrettenthalerPeter BroschJohn CopelandJames CoppingAngela CoulterVincenzo Costigliola
Gunter Danner Linda DavidsonAnna Donald
Fibi DukeAnne-Marie Felton Livio GarattiniTony GarlickFlora GiorgioMichael Griffiths
Eduardo PisaniPaul de RaeveTheo RaynorPhil RileyBrian Rogers Francoise SalamaMark SampsonDavid SharpHelen ShawJeffrey SturchioPhilippe SwennenOctavi Quintana TriasMike TremblayHannu VanhanenMaurice WagnerStephen Withers Alexandra Wyke
Cambridge Consensus Conference
Jim AppleyardMary BakerE. Andrew BalasAbraão CarvalhoJames CoppingAngela CoulterDon DetmerRodney ElgieChristine HancockJane HenneyKeith KrzywickiGraham ListerChristine MarkingHildrun SundsethEle VisserStephen Withers
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
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
Objectives of the ‘Informed Patient’
Study
• Identify Goals for Health Information & Knowledge Support
• Identify & Prioritise Key Issues• Consider an EU Policy Framework• Make Recommendations
‘Informed Patient’ Study Process
Literature
Survey
Five Stake-HolderExpert Panels
Initial Findings
Cambridge
Consensus Conferenc
e
Final Report
Existing Work
External Expertis
e
Current Opinion & Ideas
Briefing Notes & Topics
Notes & Further
ReferencesNov
2002Dec
2002Feb
2003
Comment &
Recommendations
Information ChannelsPush Interacti
vePull
Incr
easi
ng b
an
dw
idth
TV/RadioAdvertising
BillboardPosters
ClinicalConsultation
Internet
Library/Books
Leaflets/Posters
Booklets
TV SoapsDocumentaries
PressAdvertisements
PressArticles On-line
ConsultationHealth
Education
Leaflets
PatientGroups
AWARENESS ONLY(bandwidth too limited)
The Benefits of the Informed PatientThe 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
Stakeholder Panels:
• Patients & Patient Advocacy Groups• Payers (Insurers, Employers)• Pharmaceuticals & Pipeline of Suppliers• Policy Makers (Politicians & Regulators)• Professionals & Related Providers
plus Academics & Media/PR
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.
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.
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
Cambridge Consensus Conference
The 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
Objectives of The EU Framework for the
Future• Assure Quality Information• Support Decision-making• Improve Care Management• Accommodate New Information
& Communications Technologies
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.
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.
Goals: Improve Care Management
• Care Processes– Improve access for those most at risk– Treat early – Avoid over-treatment– Integrate & Support care processes
Goals: Info & Knowledge Support
• Accommodate new information & communications technologies
– Internet – Digital TV– Home monitoring– PDAs– Others
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
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.
Project ConclusionThe “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
www.jims.cam.ac.uk/research/health/tip/
tip_f.html
Full Report
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
Human Beings:
Creatures made at the end of the week when God was tired.
- Mark Twain
A Second Phase Policy Action Plan Is Needed for 2004-7
CUH recommends some next steps.
The Panel & Conference (& others) set the
general direction of travel, but when will
we agree on a detailed plan to get us there?
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.
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
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.
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
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?
IV. Co-operative Information Campaigns by
2004Twenty-four Co-operative
“Informed Patient” Campaigns between Governments & Industry involving Patients around Europe
Thank You & Best Wishes.
The First Wealth is Health. - Emerson