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Main results of the EUROPLAN National Conference on “ Social aspects ” Britta Berglund 13-14 May 2011

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The EUROPLAN project <ul><ul><ul><li>Developing recommendations on how to define a strategic plan for rare diseases, with priority areas and actions of intervention </li></ul></ul></ul><ul><ul><li>Elaborated indicators for monitoring national plans or strategies </li></ul></ul><ul><ul><li>Discussed the recommendations with stakeholders in the specific context of each Member State and European synthesis  </li></ul></ul><ul><ul><li> EURORDIS supported the organisation of 15 National Conferences on Promoting National Plans or Strategies for Rare Diseases based on the Commission Communication , the Council Recommendations and EUROPLAN Recomm. </li></ul></ul>EUROPLAN is a three-year project co- funded by the EU Commission for the development of National Plans within the Program of Community action in the field of Public Health (2003 - 2008)

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15 National Conferences

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Reports of the EUROPLAN National Conferences <ul><li>15 Final Conference Reports + 1 Synthesis Report . </li></ul><ul><li>Each Final Report includes: </li></ul><ul><li>An overall assessment of the usefulness of the EUROPLAN Recommendations for the advancement of a national strategy in the country and the transferability of the EUROPLAN Recommendations in your country. </li></ul><ul><li>Report of the discussion and outcomes of the thematic Working Groups - important conclusions on each theme have been delivered by the 15 Conferences including on Social aspects. </li></ul><ul><li>The National and the Synthesis Reports are available on: http://www.eurordis.org/content/europlan-guidance-national-plans-and-conferences#EUROPLAN National Conference Final Reports </li></ul>

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Aims? <ul><li>Patient and multi-stakeholders participated </li></ul><ul><li>Supranational coordination </li></ul><ul><li>Delivering suggestions </li></ul><ul><li>Common framework: </li></ul><ul><ul><li>Steering committees </li></ul></ul><ul><ul><li>Plenary and workshops </li></ul></ul><ul><ul><li>Chairs and rapporteurs </li></ul></ul><ul><ul><li>Final report </li></ul></ul>

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Who? <ul><li>Boards of associations </li></ul><ul><li>Patient representantatives </li></ul><ul><li>Politicians </li></ul><ul><li>Health care </li></ul><ul><li>Industry </li></ul><ul><li>Researchers </li></ul><ul><li>Media </li></ul>

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’ focus on rare diseases’? <ul><li>Lifelong perspective, child to adult </li></ul><ul><li>Complex conditions </li></ul><ul><li>Earlier diagnosis </li></ul><ul><li>Information and training </li></ul><ul><li>Support programmes </li></ul><ul><li>Reimbursement of ODs </li></ul><ul><li>Support of networks </li></ul>

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’ focus on rare diseases’? <ul><li>Resources for associations </li></ul><ul><li>Resource-poor patients can be active </li></ul><ul><li>Associations for all groups needed </li></ul><ul><li>Social support is limited </li></ul><ul><li>Social profile </li></ul><ul><li>Building bridges between research-health-care-social work-practice </li></ul>

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Social needs <ul><li>Surveys need on QoL, awareness, working conditions, social needs </li></ul><ul><li>Patient and family needs </li></ul><ul><li>Patient associations involved </li></ul><ul><li>Indicators for patient involvement </li></ul><ul><li>Large associations provide information to small ones </li></ul><ul><li>Patient led advocacy </li></ul>

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And as well … <ul><li>Medical, social, emotional support needed </li></ul><ul><li>Insurance companies are checking! </li></ul><ul><li>In-home respit care </li></ul><ul><li>Peer support </li></ul><ul><li>Patient meeting with researchers </li></ul><ul><li>Informed patient make educated choices </li></ul><ul><li>Promotion of projects with patient associations </li></ul>

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Also … <ul><li>Patient participation funded </li></ul><ul><li>Free space in media for patient associations </li></ul><ul><li>Linking of celebrities </li></ul><ul><li>Psychology counselling </li></ul>

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KEY MESSAGES by AREA <ul><li>1. RDs must be a national priority in medical research and ad hoc national research measures should be dedicated to RDs. </li></ul><ul><li>2. RD research programmes must be supported primarily by adequate public funds , even though public-private partnerships were not excluded. </li></ul><ul><li>3. RD research should be multidisciplinary and cover all research areas, but chiefly focus on translational research. </li></ul><ul><li>4. S ocio-economic research (i.e. research on quality of life, living conditions, etc.) was highlighted in most National Conferences as extremely important and should become a national priority. </li></ul>Area 3 – Research on RDs

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KEY MESSAGES by AREA <ul><li>5. Qualified patients advocates must become fully-fledged research partners. </li></ul><ul><li>6. C entres of Expertise must play a pivotal role in closing the gap between research and care. </li></ul><ul><li>7. All National Conferences called for the creation of quality patient registries as a primary objective and a basic requirement in the development of RD research. </li></ul><ul><li>8. Multi-centre national and international studies are an absolute necessity for the organisation of clinical trials. </li></ul>Area 3 – Research on RDs

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So research… <ul><li>Socio-economic research, about quality of life etc., is needed for provision of services, to provide answers to patients for empowerment </li></ul><ul><li>Patient associations should be active as research partners </li></ul><ul><li>Quality of registers is required </li></ul>

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KEY MESSAGES by AREA <ul><li>1. Mapping out Centres of Expertise is a necessary exercise, prior to planning on CoE, which acknowledges the different competences between CoEs and Centres providing care at local level. </li></ul><ul><li>2. National Conferences called uniformly for common quality standards for the designation and the accreditation of CoE. </li></ul><ul><li>3. Proximity of care is a recurring theme with answers modulated according to the size of the country and the healthcare system existing therein. </li></ul><ul><ul><li>In smaller countries , CoE for all diseases is inappropriate, still valid for some diseases, when expertise exist + networks of medical experts could be established, while promoting cross-border cooperation at the same time. </li></ul></ul><ul><ul><li>In larger countries or decentralised countries , vertical systems (local/regional/national) are preferable. </li></ul></ul>Area 4 – Centres of Expertise and European Reference Networks

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KEY MESSAGES by AREA <ul><li>4. I ntegration between medical and social levels must be strengthened further, with a necessary reinforcement of the social level . </li></ul><ul><li>5. S ervices acknowledged by Centres of Expertise as essential to provide to patients should be recognised and properly reimbursed , notably complex consultations, coordination of multidisciplinary care. Rehabilitation and social aspects should be considered in the CoE, as are equally important as healthcare in the rehabilitation process. </li></ul><ul><li>6. H ealthcare pathways are defined and adopted, based on best practices and expertise at national and international level. “Case managers” should follow individual cases all along the healthcare pathway, including the transition from the paediatric to adult age . </li></ul><ul><li>7. Mechanisms should be found to recognise and reimburse the interventions of paramedical and other specialist professionals involved in the care of RD patients. </li></ul>Area 4 – Centres of Expertise and European Reference Networks

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KEY MESSAGES by AREA <ul><li>8. T raining of healthcare professionals and of providers of social services must be ensured by the CoEs. </li></ul><ul><li>9. Promoting the participation of CoEs in European Reference Networks (ERN) should be integrated in the NP and become a quality criterion of the performance of each CoE. </li></ul><ul><li>10. C ross-border healthcare should be promoted because existing resources cannot cover all RDs , and especially for small countries where the existing resources cannot cover all RDs and mobility of patients appears both as a need and a concern. </li></ul><ul><li>11. S creening policies must be supported by robust legal frameworks and by reliable implementation and evaluation . National Conferences are calling to extend the current neonatal screening programmes and to coordinate them. </li></ul>Area 4 – Centres of Expertise and European Reference Networks

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Centres of Expertise <ul><li>Training and education </li></ul><ul><li>Participation with other centres, network </li></ul><ul><li>Development of new strategies (telemedicine, information platforms etc.) </li></ul><ul><li>Optimise the provision of care and social services </li></ul><ul><li>Validation of performance by patients </li></ul>

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KEY MESSAGES by AREA <ul><li>1. Firstly, patient empowerment is a holistic approach to each individual citizen. </li></ul><ul><li>2. Involvement of patient groups representatives in decision-making processes can be only achieved when patients are really enabled to participate to such processes. This means that patients need to be qualified to become fully-fledged partners in decision-making debates which affect them directly </li></ul><ul><li>3. The importance of specialised services for RD patients for patients and families must be recognised and financially supported by the community - in particular Respite Care Services and Therapeutic Recreative Programmes. </li></ul>Area 6 – Patient Empowerment

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KEY MESSAGES by AREA <ul><li>4. Need to devise strategies and mechanisms to recognise and integrate RD patients into existing social services (rehabilitation, access to social services and financial supports, integration into school and workplaces), while recognising their specificities and providing quality services in response to their needs. </li></ul><ul><li>5. H elp lines should be included in the provisions of a NP on RD and financially supported to provide personalised information and orientation. Help lines should be set up according to quality standards , such as those developed in the framework of European Network of Help Lines. </li></ul>Area 6 – Patient Empowerment

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Patient empowerment <ul><li>Health-care pathways </li></ul><ul><li>Decision-making involvement </li></ul><ul><li>Guidelines </li></ul><ul><li>Recognise and integrate patients in rehabilitation, school and workplace, recreation, respit service </li></ul><ul><ul><li>Modify evaluation of disability </li></ul></ul><ul><ul><li>Include other processes </li></ul></ul><ul><ul><li>Assess and descibe needs and use of resources </li></ul></ul>

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Patient empowerment <ul><li>Help lines </li></ul><ul><li>Interactive information and support services </li></ul><ul><li>Toll free numbers </li></ul><ul><li>Quality criteria for help lines </li></ul><ul><li>Monitoring of information meeds </li></ul>

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EUROPLAN <ul><li>THANK YOU! </li></ul>