Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"

Main results of the EUROPLAN National Conferences

on “Centres of Expertise and European Reference Networks”

Simona Bellagambi –EURORDIS ADVISOR

13-14 May 2011

EURORDIS Annual Membership MeetingAmsterdam 13-14 May 2011

The EUROPLAN project

Developing recommendations on how to define a strategic plan for rare diseases, with priority areas and actions of intervention

Elaborated indicators for monitoring national plans or strategies Discussed the recommendations with stakeholders in the specific

context of each Member State and European synthesis 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.

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)


15 National Conferences


Reports of the EUROPLAN National Conferences

• 15 Final Conference Reports + 1 Synthesis Report. • Each Final Report includes: 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.

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 Centres of Expertise and European Reference Networks

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

http://www.eurordis.org/content/europlan-guidance-national-plans-and-conferences#EUROPLAN%20%20National%20Conference%20Final%20Reports




Preliminary Exercise

- Expertise does exist in many countries however, is not always easy to find, not systematically and sufficiently funded and neither officially defined or identified as a Centre of Expertise hence not accessible to patients.

Mapping out CoE (Centres of Expertise) is a necessary exercise, prior to any planning on CoE

-Existence of different kinds of Centres : Expertise, Reference and Competence providing care at local

level. They are complementary and not subordinated to each

other. Their different role and competences should be

acknowledged


Designation and accreditation

- National Conferences called uniformly for common quality standards for the designation and the accreditation of CoEs and in the continued monitoring process

- Patients’ representatives should be included in all processes

- Existing resources and centres should be used, with many country referring to, in particular, university hospitals

RDTF Criteria and EURORDIS Declaration evoked in many Conferences


Designation and accreditation 2Recurring criteria

demonstrated experience and results in the care of RDs multidisciplinarity training and education of medical and paramedical specialists;

specialised information for both professionals and patients/families;

transition from paediatric to adult age; contribution to patient registries (or management of

registries); facilitation of research activities; meeting point basic and

clinical research validation of performance based on clinical results but also on

patient satisfaction; participation of the Centre to European Reference Networks

and other forms of international exposure and projects, incl. EC-funded Network of Excellence (NoE).

( deemed, in many cases, the only way forward to assure sustainable progress in the RD field)


Structure and organisation of CoEs

Recurring theme: Proximity of high level care

• Answers modulated according to the size of the country and governance of the National health system:

a) centralised or b) decentralised

• Diseases grouped by a) homogeneous group of diseases (as in the RDTF recommendations) or b)all grouped at the central level – 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.

– In larger countries or decentralised countries, vertical systems (local/regional/national) are preferable. Possible networks of CoEs

Information platforms or tools(telemedicine, protocols) and casemanagers able to functionally connect the centres with the other structures involved in the continuity of patients’ care have to be

developed


Connection and Integration • CoEs resulted to be places were mechanisms could be established

to allow 1. researchers to fully integrate within clinical services; and 2. clinicians to devote time to research without compromising care.

• By establishing translational centres, clinical and basic science could be connected with social sciences and political sciences in order to optimise the provision of both patient care and services which go beyond healthcare

• Social counselling and social services should be provided strengthening integration between medical and social levels with a necessary reinforcement of the social level.

• Rehabilitation provided by a multidisciplinary team should be considered in the CoE

The involvement of patient organisations in social counselling is essential and they should be systematically involved

Services acknowledged as fundamental for Centres of Expertise to provide should be recognised and properly reimbursed, such as complex consultations, coordination of multidisciplinary care(paramedical etc.)


Connection and Integration 2• Healthcare pathways (protocols, guidelines) are defined and adopted,

based on best practices and expertise at national and international level. • “Case managers” should dedicate their attention to individual cases and

follow them all along the healthcare pathway supporting patients in complex situation from a medical, social and/or administrative point of view

• Patients’daily care and continuity of care- transition from childhood to adult age should be guaranteed :medical knowledge and expertise of specialised centres should be structurally fed into primary care clinics, family doctors and socio-sanitary professionals through onsite meetings and opportunities, virtual and telemedicine tools. Training and education of GPs and healthcare professionals in non paediatric hospitals, have to be taken over by Centres of Expertise

Solutions should be found for the performance of activities which go beyond

the treatment (purely healthcare services) yet recognised as fundamental for

CoE, but often are underperformed due to the lack of funds/reimbursement provisions/human resources/time


Cross-border Health Care- the mobility of expertise is a primary objective, and strong

international network exchanges of know-how are of the utmost importance for all diseases .

- 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

- EUROPEAN REFERENCE NETWORK could attract CoEs providing resources, such as biobanks or registries. European funding should be considered to fund networking activities

- BUT mobility of patients appears a concern everywhere, because existing resources cannot cover all RDs, and principally in small countries

Cross-border healthcare should be promoted, especially for very rare diseases, for any situation in which there is no sufficient expertise in the country or whether particular expertise has been developed in certain countries. New EU Directive


Screening Policies

• The lack of resources such as appropriate screening centres, or the lack of consistent application of the policy, create important gaps in detection of RDs and delays/mistakes in diagnosis – Romania workshop focused on screening

Screening policies must be supported by solid legal frameworks and by reliable implementation and evaluation policies to assess the quality and performances of the programmes.

National Conferences are calling to extend the current neonatal screening programmes and to coordinate them.


EUROPLAN

THANK YOU!

Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"

Health & Medicine

Transcript of Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"