Research supported by the 5 th framework programme of the European Community. QLG4 –CT-2001-30216

1. The GenEd ProjectA European Survey of the genetic educational needs of non genetic health professionalsResearch questions and phase I resultsKirsty Challen BSc MBChBOn behalf of the GenEd research group Research supported by the 5th framework programme of the European Community. QLG4 –CT-2001-30216 Prague 6th May 2005

2. Background to GenEd • Wide variation structure of health & specialist genetic services. • UK: patchy undergraduate education. • UK: genetic counselling by non-geneticists has problems. • Approaches to genetic counselling vary between countries & specialties. • US professionals: consensus competencies. Prague 6th May 2005

3. Research aims “to conduct an empirical assessment of educational needs and priority topics for education in genetics among primary care providers and other non-genetics healthprofessionals” • Phase II • GPs/Midwives/Obstetricians-Gynaecologists/Paediatricians. • Current genetic practices and service provision. • Confidence in their skills to work with individuals and families at risk of genetic conditions. • Own suggestions for the content of genetics curriculum. • Phase I • Responsibility for setting, assessing and delivering medical education: undergraduate, postgraduate and continuing. • Genetics content at 3 levels. • Involvement of genetic professionals at 3 levels. Prague 6th May 2005

4. The GenEd Research Group Prof Leo ten Kate Dr Ulf Kristofferson Dr Hilary Harris Dr Claire Julian-Reynier Prof Irmgard Nippert Prof Jörg Schmidtke Emeritus Professor Rodney Harris and Caroline Benjamin Lina Florentin György Kosztolányi Vaidutis Kucinskas Giovanni Neri Maria Ramos-Arroyo Jacek Zaremba Elizabeth Anionwu Ysbrand Poortman Alistair Kent Wolfgang Holtzgreve Celia Delozier-Blanchet Prague 6th May 2005

5. Methods • Medical faculties. • Government departments (health/education). • Examination syllabi. • Published curricula. • Professional journals. • Specialty organisations. • Regulatory bodies. Prague 6th May 2005

6. Undergraduate medical education • 6 – 43 institutions (2-39). • 5 – 6 years +/- internship (6). • National curriculum: • Detailed • Thematic • None • Genetics Prague 6th May 2005

7. Post-graduate (specialist) medical education • 32 – 62 specialties (30-56). • Genetics a specialty in all 5 countries (not Greece/Spain). • National specialty curricula: • Available • Guidelines • None • Primary care as a specialty • Established • New • Family doctors : general/internal medicine specialists. Prague 6th May 2005

8. Genetics in specialist medical education Prague 6th May 2005

9. Continuing medical education • Compulsory in Netherlands, Germany, UK • France: annual priorities • Germany: journals • Netherlands: 5 yearly re-registration • Sweden: developing • UK: in flux! Prague 6th May 2005

10. Midwifery & Nursing Prague 6th May 2005

11. Just a taster Prague 6th May 2005

12. And on to Phase II… • Specialities most likely to encounter a patient at the first potential point of a genetic diagnosis. • GP • Paediatrics • Obstetrician/gynaecologists • Midwives Prague 6th May 2005

13. Phase II methods • Postal questionnaire constructed by GenEd team. • Some written/telephone reminders. • Random sample of specialists. Prague 6th May 2005

14. Phase II responses Prague 6th May 2005

15. Questions? Prague 6th May 2005