1 The Informed Patient The Doctor Knows Best, Does He? Gastein, October 6, 2005

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3 Contents  Where we are  Where we need to be  Bridging the gap  Overcoming the obstacles  Roadmap towards the Informed Patient

4 Where we are  Bizarre situation - Information overload on Internet - Inadequate information flow from health professionals, particularly physicians  Inadequate policy  Evidence of inadequacy of health information in practice - TIP II Report - Health Communication Journal  No single training manual

5 Where we need to be “The European Patients Forum believes that all patients, no matter their condition, background or nationality, have a fundamental and legitimate right of access to all kinds of information about their health, medical conditions and the availability of treatments including the best available management for their disease”

6 Where we need to be (2)  « Informed Decisions.. in full partnership with health care professionals » (EPF)  EU Policy which facilitates patient empowerment and information  Institutionalized Part of Health Professional Training

7 Benefits: Informed Patient  Better quality life  More discerning about health  Prevention of disease  Awareness of risks & benefits  Optimize health outcomes  Healthy patients an asset to society

8 Bridging the Gap  Involve the right PEOPLE (Patient Representative Groups = IAPO, Health Professionals, WHO, Young generation)  Develop clear and effective POLICY  Provide the most effective TRAINING material  Develop PARTNERSHIP projects  Create POLICY platforms for debate & influence EU agenda

9 PEOPLE & Existing Policies  International Association of Patients Organizations (IAPO) + EPF  World Medical Association (WMA) « Decl. Lisbon on the Rights of the Patient »  International Council of Nurses (ICN) « Informed Patients »  International Pharmaceutical Federation (FIP) « Standards for Quality of Pharmacy Services »  FDI World Dental Federation « International Principles of Ethics for the Dental Profession »  World Health Organization?

10 POLICY (Common Principles)  Right to Information & Informed Decisions  Confidentiality & Privacy  Accessible, Timely, Accurate, Clear, Relevant, Reliable  Focus on Prevention  Risks & Benefits should be communicated  Importance of Partnerships  Training Imperative

11 POLICY (Common Statement)  Common Statement on the Principles of Good Practice in Health Communication and Information Practice  Inclusive of existing policies  Concise & Global context

12 TRAINING (Common Manual)  Pocket Edition Training Manual  Examples of successful manuals (Good Clinical Practice for Biomedical Research, WMA Ethics Manual, Human Rights)  Inclusion in curricula of health professions’ training

13 OBSTACLES  Government Informed Patient = Expensive Patient?  Health Professions - Turf Wars - Older Generation vs Millenium Kids  Patients - Team dynamics (Storming, Norming, Performing)

14 ROADMAP  WMA policy & training material development (2005 – 2006)  Consensus Seeking Platform – towards a COMMON STATEMENT (Health Professions, IAPO + WHO)  Training Manual – Scholarly piece, seek endorsement & distribution by HPAs  Joint Advocacy

15 Paradigm Shift: Old  New

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