The Informed Patient Study: EU Framework for Action

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Alan McBride
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1 The Informed Patient Study: EU Framework for Action BASCD Conference, Lille, France Peter Singleton Senior Associate, Cambridge University Health Research Fellow, University College London Director, Cambridge Health Informatics 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 who supported us in the various Panel sessions and Conferences across Europe Supported by Johnson & Johnson and the Nuffield Trust

2 Does better information help? Information may not change behaviour, or may be misinterpreted Choice Change in choices may not materially affect outcomes (or effects counterbalance) May be significant barriers to access Research may not support information provided, so information is flawed; there may be no firm or clear evidence Informing Evidence Outcome Change in outcomes may not be identifiable or measured; may be lost in other effects The Issues Aging populations & increasing chronic care require active patient involvement. Medical knowledge & treatment increasingly complex. Patients generally want information & accountability. Models of professionalism are evolving. From Parental to Collaborative Timeliness: EU Policy under discussion EU Parliament rejected Commission recommendations for three disease areas G10 Communication

3 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 The Informed Patient Study 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-II) February 04 Second TIP Report May 2004

4 Cambridge Conference (TIP-I) Recommendations: Create EU Information Framework Support Implementation for Patients/ Caregivers, Citizens & Health Professionals Coordinate Efforts of Suppliers of Information Offer Leadership & Education 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

5 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. CUH Conclusions: 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.

6 CUH Recommendations Improvements must be developed at EU level in order to gain widest experience, greatest benefit, and set consistent quality standards EU should fund initial projects to explore best avenues for development, sharing of experience, and to capture evidence States should explore win-win campaigns with industry to support rapid adoption of effective technologies and to develop trust The Panels & Conference set the direction of travel, but how will we get there?

7 Dublin Conference (TIP-II): EU Framework for Action Conclusions: Formal Promotion of the issue of health information to patients and citizens Engagement with Accession countries Improve Education Public Information Develop better media relations Foster Public-Private Partnerships Re-package the evidence Support Trust, Integrity, and Community EU Framework for Action 3 main headings: Public Communications and Engagement Education Research Projects Led by: European Commission and Member State Governments Supported by: Formal Network Development structured as Goals; Strategies; Immediate Next Actions; Leaders; Current Initiatives

8 EU Framework for Action Role of European Commission and Member State Governments Public Communications and Engagement Education of Professionals and Public Research Projects Formal Network Development EU Framework for Action Public Communications and Engagement Formal Network Development Education of Professionals and Public European Commission and Member State Governments Research Projects

9 Current Initiatives Network of Competent Authorities in Health Information Health Evidence Network (HEN) with WHO HP-source.net DG Sanco funded G10 Working Group DG Enterprise Health Promoting Schools Network European Network for Workplace Health Promotion (ENWHP) EC Working Group on Healthy Lifestyles European Health Communication Network (EHCN) WHO European Patients Forum EMEA/CPMP Working Group ICN PatientTalk web-site European Health Portal Environment one size fits all? Individualbased Models N + Wealthy Well-educated Host-country W Bismarckian Sickness Fund E Models Beveridge/NHS Models Socially-disadvantaged Learning difficulties Immigrant/Visitor - S Communitybased Models

10 Senders & Receivers SENDER Top-down Source of info Constantly Refreshed RECEIVER Bottom-up Source of info Expert Patient The Patient Journey What does that mean? What are the outcomes? What are my choices? What are symptoms? What are the risks? What is the disease? Is it important? What should I do? Whom should I see? Where can I find out more? What are the alternatives? How will it affect me? How will it affect my family? What can I do? How am I progressing? How can I get help? What can I do? How can I help myself? When do I need help? What help can I get? How can I get help? What can I do? What help can I get? How can I get help? Awareness Seek Help Diagnosis Treatment Recovery Social Care Chronic Care Self Care Within Health System Self Management

11 The role of Outcomes Evidence based Information what works, not just what we think works Evidence-based information provision what information really helps, and how do we best provide it Outcomes are what matters to patients, not just clinical outcomes (though crucial to quality & safety) What Outcomes? Need for feedback at different levels: professional/team/organisation/service/system Measures for routine, one-off, or specialist collection Purpose: for quality & safety; for performance; for statistical research Clinical vs. patient-focused outcomes: patient values are critical in assessing result

12 Different Perspectives PATIENT Social Outcomes Self-esteem Outcomes Selfactualisation Outcomes Personal Values Quality of Life Consultations/ Interventions Work/Finance Physiological Outcomes Safety Outcomes Correction of Illness Across boundaries 1 Care 2 Care Social Care PROFESSIONAL The problem of Choice Choice vs. No Choice Excess of Choice (maximisers/satisficers) Why do professionals feel threatened by informed patient choice? Why not offer/find choices for patients? Promotes trust and transparency May cost less rather than more May surprise you! e.g. RCA Study & Cochrane

13 Confidentiality Model PROTECT IMPROVE INFORM PROVIDE CHOICE TIP for Dentists? UK Dentistry increasingly private or co-pay for adults OFT figures show that increasingly people will pay for choice Dentistry increasingly preventative or cosmetic showing the future of medicine? Patients are now probably better educated in oral hygiene is that dentists or Colgate? Are patients more aware (of issues, of choices)?

14 Dental provision of Information Denplan Ask the Dentist NeLH no Dentistry!! though there is Specialist Library in Oral Health Some support on NHS Direct Online What do dentists do in practice? Have you examples of good practice and/or evidence of effectiveness? Thank you. Full Report at health/tip/tip_f.html

15 Therefore, CUH Urges: 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 A Formal Research Agenda Co-operative Information Campaigns I. An EU-funded European Initiative to Construct The EU Framework for the Future An initiative is needed now to gain wide experience & assure a range of benefits, especially consistent quality standards.

16 Why involve the EU? Share experience there is comparatively little research in this area Promote best practice support use of evidence-base as widely as possible Share costs why develop multiple independent centres? All nations are now multi-cultural and multilingual it will be easier to support if development is shared The EU Framework for the Future: Objectives Assure Quality Information Support Decision-making Improve Care Management Accommodate New Information & Communications Technologies

17 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 II. Creation of a Web-based Information & Communications Network The network must assemble and, over time, monitor experience amongst key stakeholder groups across member states and localities throughout Europe.

18 European Network F UK IRL E Evidence GR IT BE D NL III. Formal EU Informed Patient Research Agenda A formal EU research agenda is essential to co-ordinate investigative projects aimed at best practices consistent with future needs.

19 IV. Co-operative Information Campaigns Co-operative information campaigns between governments and industry while involving patients can help create real benefits for all. Initiatives should: Help patients access care appropriately Provide information that patients need, not just deliver medical textbooks Provide information in an accessible format/style Support linguistic and cultural needs across national boundaries Have quality-marking and evidence

20 Current State of play CUH working to develop European network of academic centres to share knowledge and best practice evidence CUH working to build UK national network European Health Portal is important initiative G10 Communication (July 03) recommends actions including support for patient groups DTCA not a relevant issue Five Key Messages from Expert Panels All information, regardless of source, has potential bias & deserves scrutiny. Policy discussions must distinguish between advertising & other types of information provision to get meaningful policies. Trust & collaboration amongst players is key will need better input from pharmaceutical industry if objectives are to be met.

21 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. What sort of Information? Push Interactive Pull Increasing bandwidth Press Articles Press Advertisements Billboard Posters TV Soaps Documentaries Booklets Leaflets/ Posters TV/Radio Advertising Clinical Consultation Patient Groups On-line Consultation Health Education Internet AWARENESS ONLY (bandwidth too limited) Leaflets Library/ Books

22 G10 Communication - aims: Provide a realistic and practical framework for the provision of information to patients on medicinal products; Explore with member states the need to share information and to build common approaches if appropriate; Improve the quality of information to the public, and to encourage the development of approved sources that people can trust; Investigate innovative solutions to the provision of information; Explore a range of approaches, involving the different stakeholders including consumer and patient groups, academics, the pharmaceutical industry, and competent authorities in Member States. G10 Communication - actions: Establish an information and knowledge system, using the proposed European Health Portal to disseminate information, and link to national health resources; Explore, with stakeholders, a range of approaches to provide a realistic and practical framework for the provision of information medicines; Maintain the prohibition on advertising prescription medicines to the public Be pro-active in encouraging the Member States to share information on medicines with a wider group of stakeholders, including the general public; Support the recently established European Patients Forum to provide a mechanism to consider patients information needs and how best to meet these;

23 G10 Communication - actions: Reflect on establishing a collaborative Public Private Partnership involving a range of interested parties including representatives from public authorities, industry, health funds, health care professionals and patient groups; Reordering of the information in Patient Information Leaflets to improve their comprehensibility and introduce mandatory readability testing, and the EMEA will consider, with patient organisations, new ways of ensuring that information on medicines takes more account of patient needs. DTCA not relevant because: EU climate: emotionally opposed Evidence that DTCA is only effective where supported by promotion to doctors and national formularies viz. where payers wish to promote as well Suggests that co-operative information campaign in everyone s interests

24 Conflict, Research & Policy Needs Conflict 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 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.

25 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

26 Goals: Info & Knowledge Support Accommodate new information & communications technologies Internet Digital TV Home monitoring PDAs Others Complex Adaptive Systems Aims for Health Care Systems: Safe Efficiency Effective Patient-centred Timely Equitable Institute of Medicine: Crossing the Quality Chasm, 2001

27 Recommendations Create Framework for the Future Convene key stakeholders 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 Co-ordinate the Suppliers of Information Using agreed standards, promote effective provision of quality information. Leadership & Education Provide support to patient health education & continued professional development. EFA Goals (1) Establish formal networks to promote health and the value of health information for public and personal health and personal healthcare Promoting general health and health awareness, as well as information on specific high-risk conditions Promoting assertiveness skills and value of knowing health information Promote higher standards for media reporting of health issues Provide route for the public to access information and develop skills Establish a curriculum on communication knowledge and skills for health professionals

28 EFA Goals (2) Identification and support of good practices in health information provision (HIP) Establish evidence-based chronic care protocols from patient s perspective Manage the knowledge-base relating to The Informed Patient programme Enhance trust and credibility of health information sources Assure sufficient and sustained funding, coordination, and leadership for EU Framework for Action, incorporating all relevant stakeholders Establish trusted source(s) for health information EFA Strategies (1) Establish Public-Private Partnerships (PPPs) to develop and disseminate media campaigns Develop channel strategy for the various populations and cultures across Europe Develop media standards and/or guidelines for infomediaries Ensure that communication curricula relate to entrylevel ( teaching ) as well as Continuing Professional Education (CPE) ( practice ) Develop models and methods for supporting practitioners in their practice settings, e.g. models of practice where EHRs link patients with their providers; printed materials that can be adjusted for the local setting.

29 EFA Strategies (2) Ensure that initiatives towards good practice and protocols are patient-led/focused and that the approach taken includes informal care-givers as well as patients A formal research initiative to manage TIP knowledge, funded partly by EU and also supported from private sources Assessment of state of research in TIP KM, shape a funding strategy to enhance scope and quality of relevant work in order to assure a sound ongoing infrastructure A research and policy initiative to assess current status of and support dialogue to enhance trust and credibility of health information sources EFA Strategies (3) adopt EU Framework for Action as EU policy Interface with relevant portions of private sector to explore and develop public-private partnerships Evaluate policy options for establishing trusted source(s) for health information

30 Immediate Next Actions (1) Identifying existing networks which may support or integrate with this initiative Establish plan and funds for TIP network (or integration with existing networks) Identify and evaluate effectiveness of different channels across Europe Select appropriate channels and develop action plans Establish joint dialogue on current standards of practice European Commission to urge member state governments to accept UK General Medical Council (GMC) approach ins requiring CPE education on communication skills European Commission to fund multi-nation development of curricula and practice models Immediate Next Actions (2) European Commission to fund the European Patients Forum (EPF) to lead on patient involvement activities Seek funds to develop relevant KM infrastructure and research assessment by 2007 Identify aspects of the Sixth Framework Programme (FP6) which could support this work Develop outline/work plan for the trust and credibility study Compare current work/initiatives with EU Framework for Action Scope work plan to address strategy for interfacing with private sector Funding for project to evaluate policy options

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