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