Workshop 6 - "Feedback from the 15 National Conferences"

Main results of the EUROPLAN National Conference

on “Training, education, information of MDs”

Christel Nourissier

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 training, information and education of MDs

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


Main conclusions about:

• How to increase awareness ?• How to train medical doctors?• How to train healthcare professionals and providers

of social services ?• Development of guidelines, involving patients, with

specific information for patients, families, caregivers, social workers and teachers.

• Making rare diseases visible in the health care system


How to increase awareness ?

Activities to promote information and increase awareness on rare diseases to the public at large must be boosted:

- access to both national and international information websites and other sources of information: the unique role of Orphanet is highlighted everywhere

- financial support to update and validate them, to ensure a consistent quality level.

- national awareness raising initiatives, such as organisation of events on Rare Diseases Day, media campaigns, TV shows, etc...


How to train medical doctors?

To make healthcare professionals acquainted with rare diseases, training of professional doctors should start during the medical degree course and continue during their careers, with different degrees of specialisation.:– Introduction of an education package on rare disease in medical and

paramedical degree courses.2 hours mandatory, + optional courses : France) Innovative approaches such as

virtual trainings or channels : Romania – Specifically targeted trainings of professionals to be systematically

organised for specialists, also general practitioners and paediatricians to create awareness on possible rare diagnoses and to prepare them to deal on a day-to-day basis with rare patients.

Move “from the knowledge of the disease to the knowledge of the patient”.

1.


How to train healthcare professionals and providers of

social services ?• Training of healthcare professionals and of providers of

social services should be ensured by the Centres of Expertise. Training opportunities for paramedical professionals should be organised or at least coordinated within the Centres of Expertise.

• Training opportunities need to be developed for professional figures, such as the assistants of persons with disabilities, or other professional profiles which could improve the life of people living with RDs.

• Sharing experiences and resources by creating exchange among Centres of Expertise would help maximise the efforts.


Development of guidelines, of continuing education, involving

patients1. Guidelines to align actions performed at different levels of

care and by different healthcare professionals, with specific information for patients, families, caregivers, social workers and teachers.

2. Continuing education programmes for primary care providers : GPs, specialists, other healthcare professionals, including paramedical specialists should aim at providing comprehensive care to people affected by RDs and should include specific protocols for paediatricians to recognise relevant symptoms of RDs.

3. Cooperation and information exchanges between health professionals and patient associations is necessary, so to enhance patient-doctor communication (Spain, Italy).


Making rare diseases visible in the health care system

1. In general, healthcare professionals do not have sufficient awareness of RDs, Orphanet classification or of the lack of proper codification of RDs within the ICD-10. While awaiting ICD-11, it is suggested to introduce existing coding systems such as the ICD10 or the Orphanet code, possibly with cross-referring systems.

2. Day-to-day registration of rare diseases in hospitals should be organised in such a way that the workflow, as far as possible, is integrated into existing administrative systems.

3. Coordination purposes for collection of information may be better achieved by creating a (nation-wide) epidemiological portal defining a minimum data set for the existing databases and registries and supporting the interoperability of their content


Examples of good practices

• two-hour mandatory module on rare diseases included in the French undergraduate medical courses, + optional 20 hours course in Paris medical school

• training and education of medical and paramedical specialists and specialised information for both professionals and patients/families are used as one of the criteria for the accreditation of the centres of expertise

• Undergraduate and postgraduate courses are proposed for improving RD knowledge among professionals, which include opportunities to familiarise with the coding systems (Spain, Bulgaria)).


EUROPLAN

THANK YOU!

Workshop 6 - "Feedback from the 15 National Conferences"

Health & Medicine

Transcript of Workshop 6 - "Feedback from the 15 National Conferences"