The Informed Patient (TIP)
This study has been in progress since September 2002 exploring issues concerning health information provision in Europe. It originally stemmed from the discussions concerning the Pharmaceutical Review 2001 over the contentious issue of the direct provision of information to the public by industry. The study, supported by Johnson & Johnson, sought to explore the wider context and to gather evidence concerning the actual outcomes from patient health information.
We are grateful to all of those who took part in the related events and contributed ideas, experience, and suggestions to the development of this study and the related reports:
The major conclusion from the Informed Patient study is the conviction that the future of healthcare in Europe demands far greater health-related information for patients and citizens. The information and knowledge support must be available at the level of the EU/member states and also at regional/local levels to assure sufficient education and support.
The Informed Patient study addressed the key question of how to provide appropriate information to patients/citizens across the European Union in order to:
- Deliver impartial, sound (evidence-based), and accessible information and knowledge support to address the generally inadequate provision to patients/citizens noted today
- Ensure that such support will mitigate some of the burden for the growing numbers of elderly people with chronic illnesses on the already constrained healthcare systems across Europe
- Help patients and healthcare professionals better evaluate treatment choices as medical science and health care become increasingly complex
- Increase transparency and accountability of the healthcare system so that choice and cost-effectiveness are evident
- Adopt, on an on-going basis, new information and communications technologies such as the Internet and digital TV, so that healthcare operations will promote best practices, adopt new effective treatments and discard ineffective and/or unsafe old treatments.
TIP-1: The Informed Patient - The projected started with an extensive literature review and a series of "expert panels" in Brussels during October and November 2002 to gather perspectives and information from the published literature. This was then followed by a Consensus Conference, attended by stakeholder representatives from across the EU, at the Møller Centre in Cambridge to review the different stakeholder perspectives and identify policy actions for the future.
This culminated in the first TIP Report - The Informed Patient - published in May 2003 and launched at events at the Nuffield Trust, London, and the European Parliament, Brussels. The results of the report were presented variously at events and conferences in Rome, Vienna, London, and Florence.
TIP-2: An EU Framework for Action - In order to carry forward the impetus of the first report, a further conference was convened in Dublin at Trinity College Dublin in order to develop specific ideas for policy action across Europe. It was clear at this conference that the original perspective of The Informed Patient should be interpreted more widely to include public health awareness and education rather than simply provision of health information during care.
The recommendations from this conference were developed further by Professor Don Detmer and Peter Singleton into a more structured framework of policy actions working across different policy areas: the EU Framework for Action which was published in August 2004 and launched at the European Health Forum Gastein conference in October 2004.
The Consensus Statement, coming from a conference held in Cambridge in early December 2002, recommends a four-part European initiative including creation of a framework for the future, support of implementation, coordination of the suppliers of information, and continuing leadership and education.
Each component requires action as follows:
- Create a framework for the future: this can be accomplished by convening key stakeholders in the near future to develop the set of initiatives outlined in the Statement;
- Support implementation: focus the EU and member state governments and the private sector explicitly on accessibility, availability, and quality of structured information for patients/citizens;
- Co-ordinate the suppliers of information: by developing and using agreed standards, promote the effective provision of quality information;
- Leadership and education: provide critical support to patient health education and continued professional development.
The Consensus Report calls on the European Commission to take the lead in moving the agenda forward by building on and co-ordinating existing initiatives into a broader framework, bringing together both private and public sector interests to assist developments for the benefit of patients and the healthcare industry in member states and regions and localities as appropriate.
EU Framework for Action
The EU Framework for Action, developed from the TIP-2 conference held in Dublin in February 2004, identified five main policy areas and a range of 13 policy goals within these areas:
- Involvement of European Institutions, Member State Governments and Localities
- Public Communications and Engagement
- Education of Professionals and Public
- Research Projects
- Formal Network Development
These were further developed through "strategies" for implementation to 33 individual "actions" to be instigated by various actors or stakeholder groups. The EU Framework for Action report calls on policy-makers in EU institutions and member states to 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; and that
- a co-ordinated set of actions, such as this Framework, needs to be undertaken rapidly in order to improve the effectiveness of care delivery and to manage total healthcare costs.