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

The Informed Patient

An EU Framework for ActionEuropean Health Forum Gastein

Peter Singleton

Senior Associate, Cambridge University Health

TIP-2: The Informed Patientan EU Framework for Action

Professor Don Detmer and Peter Singleton

Senior Associates, Cambridge University Health

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

Why change?

• Aging population & more chronic care• Increasing complexity of medicine• Patients increasingly want more information

and accountability• Changing models of professionalismSo we need to:• Change how we deliver and co-ordinate care• Co-ordination through better information is

critical

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 effectsResearch may not support

information provided, so information is flawed;

there may be no firm or clear evidence

May be significant barriers to access

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

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

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

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

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European Commission, Member State Governments, & Localities

Formal Network Development

The EU Framework for Action

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

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

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

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)

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

Thank you.

Full Report at

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