BRIDGE HEALTH Meeting of the EUBIROD Network

BEST INFORMATION FOR PERSON-CENTRED HEALTH CARE

Nicosia, CYPRUS, Wednesday 20th-Saturday 23rdSeptember 2017

Home Purpose Programme and Slides Report Photos

Wednesday 20th September 2017

- SATELLITE MEETINGS -

Event I. 8:30-12:30 How to establish a National Diabetes Registry: best practices and lessons learned from international experiences

Organized by the Ministry of Health for doctors and nurses working in diabetes

Chairs: G. Olympios, MoH - M. Massi Benedetti, HIRS

09:00-09:15 Welcome & Introduction by Cyprus Authorities

09:15-09.30 Diabetes Information in Europe (F. Carinci, U. Surrey)

09:30-09.45 Scotland Care Information Diabetes Collaboration (S. Cunningham, U. Dundee)

09:45-10.00 Diabetes indicators in Israel (I.Zucker, Ministry of Health of Israel)

10:00-10.15 Croatian Diabetes Register (I. Pristas, Croatian Institute of Public Health)

10:15-10.30 Discussion

10:30-11:00 Coffee Break

11:00-11:15 The role of the Health Monitoring Unit and its contribution to the Diabetes Registry (M. Athanasiadou, Cyprus Ministry of Health)

11:15-11:30 Application of the EUBIROD Program in the Diabetes clinics (V. Traynor & A. Charalambous, Cyprus Ministry of Health)

11:30-12:15 Results of EUBIROD at Larnaca Diabetes Centre and Kofinou Primary Centre (G. Olympios & M. Hinnis, Cyprus Ministry of Health)

12:15-12:30 Discussion

Event II. 12:30-13:30 Press Conference with the Minister of Health

Event III. 14:00-14:45 Invited Lecture: Considerations on the Multidisciplinary team in the care of Diabetes, M.Massi Benedetti, HIRS

Organized by the Medical School of the University of Cyprus in collaboration with the Nursing Services for the medical students and registered nurses undergoing specialist training in diabetes.

Event IV. 17:00-18:30 Invited Lecture: Achieving person-centred healthcare: the role of civil society S.de Sabata, IDF

Organized by the Cyprus Diabetes Association involving regional committees and invited guests

Chairs: S. De Sabata, IDF Europe

- MAIN MEETING -

Task 8.2 – Platform for population-based registries: Strategies and tools for secure international data exchange and statistical analysis of a new generation of health outcomes, Thursday 21th – Saturday 23rd September

Thursday 21st September 2017

SESSION 1 - PRIVACY

10:00 – 18:00 Privacy and ethics meeting of the Bridge Health Ad Hoc Advisory Panel of Experts.

This session built upon the criteria defined at the 1st Bridge Health Annual Meeting and the subsequent application of the instrument realized by the panel under the coordination of University Tor Vergata. Discussion has been based on the original document “Bridge Health Report on Privacy and Ethics Impact and Performance Assessment” (PEIPA)”. Participation to this meeting has been restricted to members of the Advisory Panel and invited contributors from the Bridge Health Consortium (only for the open session)

Objectives: The final report contributes to WP11 deliverable Task 2 (led by THL Finland in collaboration with University Tor Vergata, University of Surrey and the EUBIROD network): “Comparison of feasibility and quality of performance information calculated from administrative data sets (with and without possibility for register linkages) and population based registries for disease: assessment of legal issues related to the approaches”

10:00-12:00 Open Session: “Impact of Privacy and Data Protection on Health Data Governance”

Chair: M. Massi Benedetti, HIRS – David Smith, UK

10:00-10:10 Welcome & Introduction (M. Massi Benedetti, HIRS)

10:10-10:40 Health Data Governance: Privacy, Monitoring and Research (J. Oderkirk, OECD)

10:40-11:00 Discussion

11:00-11:40 Bridge Health Report: Privacy and Ethics Impact and Performance Assessment (C.T. Di Iorio, Serectrix)

11:40-12:00 Discussion

12:00-13:00 Lunch Break

13:00 – 18:00 Closed Session: “Revision of the Bridge Health Report” (coordinated by C.T. Di Iorio)

This session has been restricted to members of the Bridge Health Advisory Panel on Privacy and Ethics Impact and Performance Assessment

Chair: C.T. Di Iorio, Serectrix

13:00-15:00 Roundtable Discussion

15:00-15:30 Coffee Break

15:30 -18:00 Revision of the Report and Final Wrap-up

Thursday 21st September 2017

SESSION 2 – DIABETES DATA SOURCES

13:00-18:00 “Information infrastructure for person-centred diabetes care: state of the art of diabetes data sources in Europe”. This session will examine the result of a survey on the characteristics of data sources storing relevant information in Europe, to be updated in 2017 using a standardized template already tested in 2015

Objectives: To produce a collaborative scientific paper authored by members of the EUBIROD Consortium, based on the document originally produced at the Surrey Meeting in September 2015

Chair: I. Stotl, U. Ljubljana - I.Zucker, Ministry of Health of Israel

13:00-13:10 Welcome & Introduction (I. Stotl, U. Ljubljana)

13:10-13:30 Structure of the survey and results (I. Stotl, U. Ljubljana)

State of the art of diabetes information in Europe. Part I: different types and levels of data sources

13:30-13:45 Cyprus (G. Olympios, Cyprus Ministry of Health)

13:45-14:00 Hungary (S. Ianos, U. Debrecen)

14:00-14:15 Israel (I. Zucker, Ministry of Health of Israel)

14:15-14:30 Latvia (E. Ramuse, Centre for Disease Control of Latvia)

14:30-14:45 Malta (S. Fava, University of Malta)

14.45-15.00 Discussion

15:00-15:30 Coffee Break

15:30-15:45 Poland (J.Polanska, Technology University of Silesia)

15:45-16:00 Romania (P. Gagniuc, Romanian Academy)

16:00-16:15 Slovenia (I. Stotl, University of Ljubljana)

16:15-16:30 Discussion

16:30-18:00 Collective drafting of a collaborative scientific paper (coordinated by F.Carinci)

Friday 22nd September 2017

SESSION 3 - PLENARY

09:00-13:30 “Strategies and tools for person-centred high value care: a new generation of health outcomes and monitoring systems”. This session will present new strategies, solutions and tools to underpin person-centred health systems through a new generation of outcomes and monitoring systems.

Objectives: To present an overview of recent trends in the field of health outcomes measurement and health information, with specific applications in diabetes. To update members of the EUBIROD network and associated partners about recent contributions to international standards.

Chair: F. Carinci, U. Surrey – M.Salt, ICHOM

09:00-9:10 Welcome & Introduction (F. Carinci, U. Surrey)

09:10-10:30 Section 1. Patient Reported Outcomes Measures (PROMs)b>

09:10-9:30 Results from OECD Ministerial 2017: the PaRIS initiative (J. Oderkirk, OECD)

09:30-9:50 Standardized Patient-Reported Outcomes Measures (PROMs) in Diabetes (M.Salt, ICHOM)

09:50-10:10 The perspective of people with diabetes (S.Michael, CDA, S.de Sabata, IDF Europe)

10:10-10:30 Discussion

10:30-11:00 Coffee Break

11:00-13:30 Section 2. Health Information

11:00-11:15 Results from OECD Ministerial 2017: Recommendations on health data governance (J. Oderkirk, OECD)

11:15-11:30 Report on Privacy and Ethics: Bridge Health Final Deliverable 11.2 (C. T. Di Iorio, Serectrix)

State of the art of diabetes information in Europe. Part II: national audits, registers and surveillance systems

11:30-11:45 UK-Scotland (S. Cunningham, U. Dundee)

11:45-12:00 Belgium (K. Doggen, Belgian Institute of Public Health)

12:00-12:15 Croatia (I. Pristas, Croatian Institute of Public Health)

12:15-12:30 Germany (L. Gabrys, German Diabetes Surveillance System)

12:30-12:45 Sweden (S. Gudbjornsdottir, Swedish National Diabetes Register)

12:45-13:00 UK-England (S.de Lusignan, U. Surrey)

13:00-13:15 EUBIROD contributions to OECD projects 2017 (F. Carinci, U. Surrey)

13:15-13:30 Discussion

13:30-14:30 Lunch Break

SESSION 4 – DATA ANALYSIS

14:30-18:00 The new BIRO software and the EUBIROD Report 2017. This meeting will examine the result of an updated data collection of a selected set of diabetes indicators (as indicated at the 1st Bridge Health meeting) and key active participating centres, using the new tools delivered in Bridge Health.

Objectives: To present and discuss major deliverables of Bridge Health Task 8.2. To revise outcome and impact indicators of Task 8.2 in relation to the Bridge Health project. To produce a collaborative scientific paper authored by members of the EUBIROD Consortium, based on an updated analysis conducted between July-September 2017.

Chair: S. Cunningham, U. Dundee - K. Doggen, Belgian Institute of Public Health

14:30-15:00 Bridge Health Deliverable M8.5 “Blueprint of open source software platform for population-based chronic diseases registries” (F. Carinci, U. Surrey)

15:00-15:15 Bridge Health Deliverable M8.6 “Manual of requirements and technical specifications for users and programmers” (S. Gualdi, U. Tor Vergata)

15:15-15:30 Test Data Analysis using NeuBIRO: user experiences (I. Stotl, U. Ljubljana)

15:30-16:00 Discussion

16:00-16:30 Coffee Break

16:30-18:00 Collective planning of EUBIROD Report 2017 using NeuBIRO and drafting of a collaborative scientific paper (coordinated by F. Carinci)

Saturday 233d September 2017

SESSION 5 – EUBIROD NETWORK

07:00-08:00 Meeting of the Steering Committee of the EUBIROD Network

08:00-10:00 General Assembly of the EUBIROD Network

Objectives: To revise the goals, composition and governing rules of the EUBIROD network. To discuss the way forward on how to implement the results of Bridge Health Task 8.2 in future research activities. To plan new steps on improved data collection and analysis at international level.

Chair: M. Massi Benedetti, HIRS – Z. Metelko, U. Zagreb