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Actualités |
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ActualitésICTs and health07/10/2011(no. 83, 3rd Quarter 2011) No. 83 - ICTs and health ICTs and health Edited by Robert PICARD, Elettra RONCHI & Graham VICKERY No. 83, 3rd Quarter 2011
The papers presented in this issue shadow the diversity of approaches related to ICT implementation within the health system. They point out also the specificity of the sector. The particular position of health within our economies, the weight of public financing, the role of public authorities in the decision process to launch a new product and change health delivery systems, the vital issue of improved outcomes for users of health services, and the specific relationship between them and healthcare professionals: all of these issues help to explain why the health sector is often “late” in terms of ICT penetration. Development of the ICT health market and applications are very much related to the value perceived by each of the numerous stakeholders. The two interviews illustrate these challenges from an international and institutional perspective, with Fredrik LINDEN, Project Coordinator, Smart Open Services for European Patients, epSOS, and from a regional and operational perspective with Hervé BARGE, Chief Information Officer of the French regional health agency. Exclusive: The interview with Fredrik LINDÉN, Building Smart Open Services Across Borders C&S: In 2011 more than 30,000 hospital caregivers in 10 European countries will participate in an exchange of electronic patients' records (EPRs) in the world's largest, first-ever cross-border connection of e-health systems. Brussels refers to this as a 'large-scale e-health implementation'. What led to this landmark achievement? Which countries are involved? Fredrik LINDÉN: EpSOS - which stands for Smart Open Services for European Patients - has been conceived from the very beginning as a large scale, cross-border, pilot project. Launched in 2008 with the contribution of the European Commission and 12 EU Member states (MS), since January 2011 epSOS includes a total of 23 MS involving more than 700 people. When fully operational, the epSOS pilot is expected to engage more than 30,000 health care professionals exchanging patient summaries between 3,400 points of care. This level of involvement is a sign of the increasing recognition of the critical importance of information technologies (IT) in the health sector and demonstrates that implementation and cross-border interoperability of national programs across Europe are reaching a level of maturity that is very promising for the future of e-health. C&S: What are the aims of this pilot project? F. L.: Projects of this scale have multiple purposes. Although epSOS is mainly about cross-border health information exchange, the expectation is that it will achieve much more than this. The main goal of epSOS is to increase patient safety by enabling the electronic exchange of basic patient medical information across Europe's borders. Consider this scenario: Mr Smith, who is retired and suffered a stroke in 2006 will be able to travel from France to Denmark knowing that a summary of his medical record will follow him and be accessible to doctors in case of an emergency. During a stroke, every minute counts and access to a medical record and neurological care soon after onset of initial symptoms makes the difference between life and death. Another scenario could be that Mr Smith runs out of a vital medicine that is already prescribed in his home country, while on vacation in Denmark. In this latter case, the pharmacist should be able to electronically access the prescription from the same eHealth interface she/he uses for prescriptions ordered in Denmark. Mr Smith is a fictitious character, but these situations are real and increasingly common. Their examples show how greater use of information technologies can improve safety, the quality of care and also reduce costs by reducing the need to duplicate tests. Another of epSOS’s aims is to support the implementation of the 2011 "EC patients' rights directive in cross border health care" (COM 2008/414 final), which entitles European patients to seek health care in another EU country while being reimbursed by their national social security system. Finally, the epSOS project is also viewed as a starting point and a stimulus for further co-operation on eHealth development in Europe, which goes well beyond these first two cross-border pilot services. Achieving the epSOS vision is, however, a long and challenging journey. The exchange of data which lies at the heart of the epSOS pilot requires the development of a robust architecture and a normative framework which is agreed between all parties. This framework must ensure that health-care professionals can rely upon the authenticity of the clinical data on which they will base decisions; that suitable systems of security exist to ensure that data cannot be accessed by unauthorized parties; and that patient rights are duly respected by all parties. C&S: What IT services has epSOS chosen to address and why? How will European citizens benefit? Is private sector involved? F. L.: There are many difficult issues to be solved to fulfil the vision of e-health as an enabler of continuity of care both within countries and across borders. EpSOS has chosen to start with basic patient summaries and e-prescriptions. These two areas represent essential building blocks of a country's electronic health information systems and, as such, are priority areas in the strategic plans of many European countries. The intention with epSOS is to gather data and learn from these pilot operations also to assist countries in accelerating their own national deployment of these services. The potential of epSOS can however, only be fully exploited if tools and solutions are interoperable. While it is possible to summarise why and how eHealth interoperability should be promoted and who the actors are, it is more difficult to suggest a common pace of change. Implementing interoperability requires a complex set of framework conditions, organisational structures and procedures that need to be agreed by all relevant stakeholders. For this purpose, epSOS has been working closely with the 'Integrating the Healthcare Enterprise' (IHE) initiative in promoting the coordinated use of standards such as DICOM and HL7. Thirty-five companies are contributing to the project and are providing a great deal of support. Many of these companies are also associated with the IHE. C&S: How long did it take to sort out the legal and technical implications for transferring patient data? What were the main issues? How were they overcome? F. L.: It took the epSOS working groups a full year to arrive at a framework agreement for transferring patient data. Addressing privacy issues has been one of the defining issues for epSOS. There are some fundamental differences across EU countries on how specific health information is handled and particularly on the requirements for informed consent. But the objective of the epSOS project is not to propose new frameworks or amendments to existing legislation; the role of the project is rather to work with what is available, especially in areas where transposition of the EU directives has taken place. There are, nonetheless, aspects of fundamental legislation issues that are not regulated at EU level and that have to be dealt with on a case by case basis. For example, professional accreditation with respect to access to health records varies among Member States. In some countries nurses are not allowed to access patient data, while in others, nurses provide supervised care traditionally provided by doctors. The challenge is therefore, to create conditions that will allow for health data exchange across as many of the epSOS MS as possible, whilst respecting local frameworks and, at the same time, establish a sense of trust in the system for all parties (authorities, providers and patients). We call this "building trust by design". Trust will therefore be pursued by means of introducing safeguards at the level of the processes and for auditing compliance. In practical terms this has meant the need to include additional contractual requirements for the pilot operation. An issue of great importance and which is directly linked to increasing trust is making sure that all actors are appropriately involved in this work from the beginning. In particular, epSOS patients must be aware of the level of data protection assured in epSOS and must give informed consent for data access in that context. The pilot is conducted on the basis of an opt-in consent framework. This means that no epSOS data will be collected either directly or indirectly from healthcare providers without the freely given, specific and informed consent of the patient, according to the national law of the country where treatment is provided. C&S: How will success be measured? How sustainable is the project? How will the cross-border information exchange platform be governed and financed over the long term? F. L.: A number of different tools such as questionnaires, interviews or automatic data collection will be used to evaluate the epSOS project. This will include an assessment of the impacts of the new services proposed by the project (for example, organisational and financial impacts and patient safety). Patients will be made aware of the importance of evaluation and will be asked to return questionnaires before discharge from the hospital, or when leaving a pharmacy. Health professionals who use the epSOS service will also be made aware of the importance of the questionnaires and will be invited to return one questionnaire after each visit and participate in the interviews. While the issue of reimbursement and the long-term operation of the services is out of scope for epSOS, the project shall produce and deliver, through a number of its deliverables, practical guidance on how to make the transition from the pilots to normal operation and will contribute to this through its recommendations at the end of the project. We have, however, not yet looked at the various business models to ensure sustainability. These will be discussed intensely, I am sure, in 2013 and 2014. |
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