Building European Reference Networks Exploring concepts and national practices in the EU

Transcription

1 Building European Reference Networks Exploring concepts and national practices in the EU 7th European Conference on Rare Diseases & Orphan Products The Rare Disease Puzzle: Bringing the Picture to Life Berlin, 10 May 2014 Willy Palm, Dissemination Development Officer

2 Directive on the application of patients rights in cross-border health care (9 March 2011) Aims Provide more legal certainty about rights and entitlements to care in another Member State Facilitate access to safe and highquality cross-border healthcare Chapters: I. General provisions (art. 1-3) II. Responsibilities of the Member State of treatment (art. 4-6) Promote cooperation on healthcare between Member States III. Reimbursement of costs of cross-border care (art. 7-9) (In full respect of the national competencies in organising and delivering healthcare) IV. Cooperation in health care (10-16) V. Implementing and final provisions (art ) 2

3 ERNs in the cross-border care Directive (Recital 54 Article 12) Main goal and focus: General principles: Improve access to diagnosis and provision of high-quality healthcare to all patients who have conditions requiring a particular concentration of resources or expertise focal points for medical training and research, information dissemination and evaluation, especially for rare diseases. between providers and centres of expertise in Member States based on the voluntary participation Member States to reinforce their continued development Connecting providers and centres of expertise at national level Foster their participation in ERNs Commission to develop criteria and conditions for ERNs and providers joining to receive support clinical excellence, multidisciplinarity, GP guidelines, quality and outcome assessment, research & training, collaboration. 3

4 Building European Reference Networks Exploring concepts and national practices in the EU The use and development of reference networks in countries in Europe For what medical conditions or interventions? What drivers and motivations for their creation? Which regulatory, administrative and financial procedures? What impacts and challenges for developing ERNs at European level?

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6 Different concepts - focus - motivations Centers of excellence Centers of reference Centers of expertise Networks of centers of reference Reference networks Sharing resources (cost-effectiveness) Concentrating cases (safety) Integrating / standardizing care (quality) Moving/referring patients Moving/sharing expertise 6

7 Changing needs and processes in healthcare delivery justify for the development of networks Ageing population with increased chronic conditions, multimorbidity and mix of social and health care needs Growing complexity and specialisation in healthcare delivery, concentration and centralisation of care Reduction in length of stay, increased day hospital procedures and blurring boundaries between in- and outpatient Increased focus on quality and safety (standards, monitoring, reporting) Development of clinical guidelines, patient pathways, integrated care models with increased need of coordination Focus on increasing efficiency (cooperation vs competition?) 7

8 Expertise? Excellence? Reference? Centres? Networks? Patients? Knowledge? Clinical excellence Multidisciplinary and multi-faceted approach Coordination of care and support Quality control Outcome measurement Research-training-treatment Knowledge transfer: standards and best-practice guidelines Communication and patient involvement 8

9 Dimensions for reference centres and networks Governance Objectives Function Condition Area Formal Informal Peer Structure Hub and spokes Organic Efficiency Quality Safety (Equity) Market position Referral of patients Transfering knowledge Prevalence Cost Complexity Rare Critical Chronic Common EU-wide Transnational National Interregional Regional Source: Palm W, Glinos I A, Garel P, Busse R, Rechel B, Figueras J (Eds.) Building European Reference Networks. Exploring concepts and national practices in the EU. ObservatoryStudies Series n 28; (forthcoming 2013) 10

10 National practice trends (1) de facto systems: no clear criteria, referral rules, quality assessment informal referral to leading centres Self-declared excellence Growing formalisation: increasing need to concentrate highly specialised care (also due to the crisis) Planning: Hospital reconfiguration: different levels of care (e.g. EE, FR, IT, HU) Well-established designation procedures: Spain (RCDUs), Sweden (NSMC), Denmark (specialised functions), England (Specialised Commissioning Groups), Netherlands (tertiary referral function) Norway (national treatment services) Alternative ways Minimum activity tresholds (NL, DE) SHI agreements (BE, DE) Quality standards and certification (DE) 11

11 Reference Centres, Departments and Units (RCDUs) of the Spanish NHS Defining the scope and designation criteria (1) Jorge Relaño, Ministerio de Sanidad, Servicios sociales e igualdad, Spain 12

12 Reference Centres, Departments and Units (RCDUs) of the Spanish NHS Designation process (2) Jorge Relaño, Ministerio de Sanidad, Servicios sociales e igualdad, Spain 13

13 Sweden: defining National Specialized Medical Care (NSMC) M. Jansson, Socialstyrelsen, Sweden 14

14 National practice trends (2) Widening scope Rare diseases: impuls from national plans or strategies (FR, CZ, BE, HU, SV, MT); networks built around national coordination centres (IT); competence networks (DE, FR, NL) to stimulate horizontal collaboration and vertical integration; patient/parents networks (NL: genetic cogenital disorders) Complex care: transplants (CZ, FR, IT, RO) burns (EN), trauma (PL), stroke (EN), paediatric heart surgery Cancer: national reference centres for most complex or rare cancers (LT, EE, CZ, SV), national plans and institutes (BE, FR) to improve quality of cancer care and to ensure sharing best practice and uptake of new therapies and coordination of training and research Chronic conditions (e.g. Diabetes, ParkinsonNet NL) Cross-border referrals (MT, Baltics) 15

15 Concluding remarks Wide variety of practices and types of networks: prevalence is not always most relevant indicator. National focus still seems to be rather on centres than networks Supporting trends of concentration and integration/coordination of care Despite positive perception also criticisms (undermining choice, enterpreneurialism, decentralisation) Need for a clear and transparent framework to control expectations of both patients and providers gradual approach? Importance of solid designation procedures with detailed and objective criteria Monitoring and re-evaluation (individual or institutional expertise) 16

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