The electronic patient record: quel

Transcription

1 The electronic patient record: quel June 15th 2012 what role for the patient?

2 Table of Contents Welcome... 1 agenda... 2 Speakers... 4 Join us... 9

3 Welcome The Public Federal Service Public Health,Food Chain security and Environment together with the Belgian Society of MEDICAL informatics (MIM asbl) and Pro- REC organize a symposium on the topic : "The electronic patient record: what role for the patient?" In Belgium, thanks to the development of regional health networks sometimes also called hubs, the last few years have seen the shared electronic health record progressively becoming a reality. Although the key issues of direct access to the EHR and active participation of the citizen-patient in his careplan are still nascent in Belgium, other European countries have already put the question to the test since quite a few years. Some of them have now decided to make it an integral part of their national strategy. What are thus the benefits, concerns, issues and expectations created by such a scenario? What are the conditions for those innovative and integrated approaches to take root in Belgium? On June 15, we have invited the most active European initiatives to present their experience and help answering some of those questions. Representative stakeholders (practitioners, patients and authorities) will also be asked to react and provide their vision for Belgium during two round tables. An organization of In collaboration with Salle Pacheco (Finance Tower) boulevard Pacheco Brussels Phone : 0032 (0)2/ luc.nicolas@health.belgium.be 1

4 Program 09:00 AM Reception and registration 09:30 AM Welcoming speech Session 1 Giving direct access to medical data to the patient: What difference does it make? Sweden and England are the first two European countries to have decided to guarantee through legal provisions a direct access to the Electronic Health Record for the patient. The two main projects which have contributed to this decision will come and explain us what has been their initial thoughts and what have been the crucial elements which convinced their governments. In Belgium, this question has also begun to be discussed inside a certain number of fora and in particular within the Regional Health Networks in full deployement. Even though the right of direct access to the EHR has not been granted, a number of fundamental rights have however already been granted to the patient. Two Belgian Regional Health networks will come to share their experience on the topic. The roundtable which will follow those presentations will gather representatives of GPs and patients and will try to answer this question: Is Belgium ready to follow the path chosen by Sweden and England?. 09:45 AM Dr Benny Eklund (Sweden) Sweden - From long term and small scale to large scale and very soon 10:15 AM Dr Mohammad Al-Ubaydli (United Kingdom) Patients know best : Patient-controlled medical records are the only way to provide integrated care. 10:45 AM Walter Atzori, Forum Européen des Patients (EPF) "Chain of Trust ": Main findings from a European study involving all key stakeholders. 11:00 AM BREAK 11:20 AM Dr André Vandenberghe, RSW (Wallonia health network) Dr Tom Fiers, COZO (Collaborative Care Platform Gent) The patient s place in the Belgian health networks, where are we? " 12:00 AM Panel discussion animated by Dr Etienne Declercq (MIM asbl) : with the participation of Domus Medica (Dr van pottelbergh), SSMG (Dr Vanhalewyn), L.U.S.S. (Ligue des Usagers des Services de Santé) (Miecky Fierens), V.P.P. (Vlaamse Patient Platform) (Ilse Weeghmans), the Ehealth Platform (F. Robben) and the Commission for the Patients rights (TBC) 12:45 AM LUNCH 2

5 Session 2 Giving the patient a proactive role in the management of his disease, what difference does it make? Ageing and changes in lifestyles have led to a worldwide increase of chronic diseases that is challenging the sustainability of our health and welfare systems. Belgium is directly affected by this very heavy trend. This has prompted the need to revise how health and care are being provided and new modalities of service delivery have been suggested. Thus, the initial multidisciplinary team work has evolved into integrated care models where patients, professionals, levels of care and agencies are brought together in a coordinated, collaborative way. Roles are thus meant to change in a very significant way and the patient will be called here to play a pro-active role. Recent clinical research is providing us with a more precise understanding on the clinical characteristics of chronic conditions incorporating a wider intrinsically complex scenario: the expression of a continuum or a common group of diseases with intertwined gene-environment interactions, and co-morbidities, leading to complex phenotypes. We might need to change our clinical paradigms. We might be witnessing the dawn of a new type of medicine that can be predictive, preventive, personalized and participatory. Two examples of particularly innovative programs focusing on pulmonary obstruction and diabetes will be presented during this session. Two other projects, funded by the European Commission will also provide us with an overview of the initiatives already taken in a certain number of regions in Europe. We will see that also in Belgium certain initiatives begin to be taken to give the patient a more active role. The roundtable which will follow will gather patients, specialists and possible payers in order to discuss if, how and when this kind of integrated approach could take root in Belgium. 2:00 PM Dr Albert Alonso (Spain) Nexes : A patient-centered program of transmural care for chronic diseases. Focus on the pulmonary obstruction. 2:30 PM Dr Igor Tauveron (France) Remote education and support of patients living with diabetes: how far can we go? 3:00 PM Dr Eric Mertens a belgian initiative that promotes patient s adherence to the therapeutic recommendations and encourages the proper use of medicines. 3:20 PM BREAK 3:30 PM Dr Benny Eklund (Sustains II - Sweden) and Dr Ana M. Carriazo (Palante - Spain) Projects SUSTAINS II and PALANTE aim to enhance the patient s role in different clinical settings and environments. The projects implemented in 14 European countries (21 regions) are only being launched now but provide an excellent indicator of the general European temperature on this topic. 4:20 PM Panel discussion moderated by Luc Nicolas, PFS Public Heath, with the participation of medical specialists, patients with chronic diseases and representatives of the INAMI/RIZIV and Mutuality s. 5:00 PM End of day 3

6 Speakers Session 1 - Giving direct access to medical data to the patient: What difference does it make? 09:45 AM Dr Benny Eklund (Sweden) Sweden - From long term and small scale to large scale and very soon. Dr Benny Eklund is physician and CIO of County Council of Uppsala in Sweden. He has also been involved in a number of European Projects. Dr B. Eklund has been the Chairman of the Swedish national organization Carelinks, Working Group for Patient Portals. Dr B. Eklund has been an author of papers in the field of ehealth and has been invited speaker to conferences both inside Europe as well as Canada and USA. He is presently the co-ordinator of the EU-funded Project Sustains. 10:15 AM Dr Mohammad Al-Ubaydli (United Kingdom) Patients know best : Patient-controlled medical records are the only way to provide integrated care. Dr Mohammad Al-Ubaydli is founder and CEO of Patients Know Best"and has over 15 years of experience in medical software. He trained as a physician at the University of Cambridge, worked as a staff scientist at the National Institutes of Health and was a management consultant to US hospitals at The Advisory Board Company. He is the author of seven books, including Personal health records: A guide for clinicians" and Streamlining Hospital-Patient Communication: Developing High Impact Patient Portals. He is also an honorary senior research associate at UCL medical school for his research on patient-controlled medical records 4

7 10:45 AM Walter Atzori, European Patients Forum (EPF) Chain of Trust : Main findings from a European study involving all key stakeholders. Walter Atzori is Senior Programme Officer at the European Patients Forum (EPF). Having been involved for several years in various ehealth projects as patient representative he has gathered extensive experience in areas which are critical to the successful deployment of ehealth services such as user acceptance, patient empowerment, and identification and integration of user requirements. At EPF he is currently involved in various EU projects and initiatives in the area of ehealth and health research. 11:20 AM Dr André Vandenberghe (Wallonia Health network) and Dr Tom Fiers, COZO (Collaborative Care Platform Gent) The patient s place in the Belgian health networks: where are we? Dr André Vandenberghe is a medical doctor specialized in medical informatics. He has been supporting the development of medical softwares for the private sector for 12 years (IBM, Cap Gemini, GSK) both for hospital and primary care sectors, at national and international levels. He is since 2000 the CIO of the CHU of Charleroi. As a recognized expert in standardization in the healthcare sector, he has been holding between 2000 and 2006 the position of secretary of the data working group" of the Health Telematics Commission. He is also the main architect of the Walloon health network" that he has been coordinating since In 2011, he has been elected ehealth personality of the year" in Belgium. Dr Tom Fiers is a clinical biologist at the Universitair Ziekenhuis Gent (University hospital in Gent), Hormonology service, where he is responsible for the design of the LIS system, lab automation and electronic ordering. A close involvement in the development of electronic patient records at UZ Gent is closely associated with a participation in numerous national and international standardization initiatives in healthcare. He also plays a coordinating role within the Collaboratief Zorgplatform Vlaanderen (vzw Collaborative Care Platform Flanders) which aims at an open collaboration between hospitals and healthcare providers to achieve a better and more integrated transmural care, within the framework of ehealth 5

8 12:00 AM Panel discussion moderated by Dr Etienne Declercq (MIM asbl) : with the participation of Domus Medica (Flemish Scientific medical association), SSMG (French speaking GP Scientific Association), L.U.S.S. ( League of Users of Health Services), the Vlaamse patient platform (Flemish Patient Platform), the Patients Rights Commission and the Ehealth Platform. Dr Etienne de Clerq (MIM asbl) - Ilse Weeghmans (VVP) - Dr Vanhalewyn (SSMG) - Dr H. Herwig van pottelbergh (Domus Medica) Dr F. Robben (ehealth Platform)- TBC (Patients rights commission). Session 2 - Giving the patient a proactive role in managing his disease, what difference does it make? 2:00 PM Dr Albert Alonso (Spain) Nexes : a patient-centered program of transmural care for chronic diseases. Focus on the pulmonary obstruction. Dr Albert Alonso, MD (Barcelona University, 1986), PhD (Barcelona University, 1992), Postgraduate degree on Management and Organisation of Information Systems (PompeuFabra University, 1996) Currently he works at the Innovation Directorate of Hospital Clinic, Barcelona where he is responsible for Clinical efficiency through ICT integration. His main lines of work focus on the definition, evaluation and deployment of new models of health care provision with a special emphasis in integrated care models that use ICT. He has participated in numerous R&D projects since 1997, often as a member of the coordinating team. At present he is local PI of the Homecare project (completion of evidence base of integrated homecare and dissemination of research results) and deputy of the coordinator for the Nexes project (large deployment and validation of ehealth programs for chronic patients with different pathologies) Regular lecturer in pre-graduate and post-graduate courses. Founder and scientific advisor for the private company Linkcare Health Services SL. Vice-chair and founder of the International Foundation for Integrated Care. Secretary of the Catalan Society for Clinical Documentation. 6

9 2:30 PM Dr Igor Tauveron (France) Distance educating and supporting patients with diabetes: how far can we go? Dr Igor Tauveron has been working as a physician specializing in Endocrinology - Diabetes and Metabolic Diseases since He leads the unit Endocrinology and Diabetes at the University Hospital of Clermont Ferrand, France. He is also professor at the University of Auvergne. His professional activity is shared between the management of rare endocrine diseases at the Competence Centre "Maladies endocrines rares" (rare endocrine diseases) labeled by the Ministry of Health and the direction of a research team on the mechanisms of adrenal tumorigenesis and Diabetology with the support of the CNRS (Centre National de la Recherche Scientifique), INSERM ( National Health and Medical Research Institute) (INSERM) and the University. Practicing since a long time in a semi mountainous, vast and sparsely populated region, Auvergne, he became interested in epidemiological aspects of diabetes care. After having investigated the consequences of precarity and rurality on the management of the disease, Professor Tauveron undertook, in partnership with the Auvergne Region and the Agence Régionale de Santé (Regional Health Agency), to evaluate the use of Telemedicine in the management of diabetes. Beyond the care, it is indeed the whole complexity of the therapeutic patient education that we need to succeed to relocate through innovative technologies. 3:00 PM Dr Eric Mertens an initiative that promotes adherence to doctor s treatment recommendations and encourages the proper use of medicines Dr Eric Mertens is a physician and a co-founder He is also the Publisher of the medical magazine Semper Luxembourg, General Manager of DSB CommunIcations and consultant in the medico-pharmaceutical sector. He had previously held several key positions within the Roularta group. 7

10 3:30 PM Projects SUSTAINS II and PALANTE aim to enhance the patient s role in different clinical settings and environments. The projects implemented in 14 European countries (21 regions) are only being launched now but provide an excellent indicator of the general European temperature on this topic Dr Ana Maria Carriazo (Spain) Dr. A. M. Carriazo (MD- PhD) is a specialist in Preventive Medicine and Public Health.. She has been since June 2008 Senior Advisor for external action in health, within the General Secretariat for Quality and Modernization of the Regional Ministry of Health of Andalusia. Previously, she joined the Cabinet of the Regional Minister of Health of Andalusia, in March Before, she had worked at the Andalusian Health Service for more than 19 years, with different responsibilities. She has collaborated at the Department of Preventive Medicine /Social and Health Sciences, of the University of Seville, and has published both at the national and international level. Dr Benny Eklund (Sweden) Dr B. Eklund is physician and CIO of County Council of Uppsala in Sweden. He has also been involved in a number of European Projects. Dr B. Eklund has been the Chairman of the Swedish national organization Carelinks, Working Group for Patient Portals. He has been an author of papers in the field of ehealth and has been invited speaker to conferences both inside Europe as well as Canada and USA. Dr B. Eklund is presently the co-ordinator of the EU-funded Project Sustains. 4:20 PM Panel discussion moderated by Luc Nicolas, SPF SPSCAE, with the participation of medical specialists, patients with chronic diseases and a representative of the INAMI Luc Nicolas (FPS Public Health) - Dr Marc Bangels (Inami) - Jean-Marc Laasman (Mutualités Socialistes) - Evelyne Dewez(Oxygène Mont- Godinne) - Stijn Deceukelier (VlaamseDiabetesVereniging) - to be confirmed (Lung specialist) - to be confirmed (Diabetologist) 8

11 Join us June 15th 2012 Free participation simultaneous translation (french-dutch-english) Registration required starting April 15 via the website Adress: Salle Pacheco, boulevard Pacheco Brussel Parking (paying) 50m. from from there (5, Boulevard Pacheco Brussels) Métro (lines 2 and 6) Station Botanique/Kruidtuin Bus and tram station Botanique/Kruidtuin Train: Brussels Central station or Brussels North station. Contact : Luc Nicolas, Public Federal Service Public Health, Food Chain security and Environment 0032 (0)2/ luc.nicolas@health.belgium.be Ed. Resp. : Dr. Dirk Cuypers, Place Victor Horta 40 Bte 10, Bruxelles Conception graphique : Thierry Sauvenière Copyright couverture : Japolia - Fotolia.fr 9