1. Establishing the BNR – Stroke: Achievements and Challenges CAREC/PAHO Curacoa,15-16 November 2010 Gina Pitts, BNR-CVD Registrar Chronic Disease Research Centre, Jemmotts Lane, Bridgetown Barbados

2. 2 Overview BNR – Stroke background Challenges Achievements On behalf of the Ministry of Health

3. The past

4. 4 The Barbados National Registry for Chronic Non-communicable Disease (BNR) An MoH initiative comprising three national surveillance systems Stroke (July 2008) Heart (acute MI) (July 2009) Cancer (July 2010) First multi-chronic disease registry in the Caribbean

5. Why 3 registries? Three registries: not three times the effort! Data sources broadly similar Similar resource needs One data management system - one database for CVD registries

6. 6 BNR objectives To collect timely and accurate national data on the occurrence of cancer, stroke and acute myocardial infarction (AMI), in order to contribute to the prevention, control and treatment of these diseases in Barbados

7. 7 Operational Management Structure BNR Director (Epidemiologist) Senior Registrar CVD Data abstractor Stroke Data abstractor Heart 28 day follow up Nurse Registrar BNR-Cancer Data abstractor Cancer Data Manager Governance committees Professional Advisory Board Technical Advisory Board Operational Structure of BNR in 2010 Statistician Steno clerk/data entry Clinical Directors

8. Roles and responsibilities RoleResponsibility Professional Advisory Board Provides support and advise regarding fulfillment of BNR Objectives Technical Advisory Committee Provides oversight, logistical support and assistance with high level issue resolutions BNR DirectorResponsible for technical direction and leadership of the BNR StatisticianProduces query reports and analysis data Clinical DirectorProvides assistance with clinical query resolutions and is involved in promotional events

9. Roles and responsibilities RoleResponsibility BNR-CVD registrarProvides day to day team leadership and liaison with other core staff. Manages data collection and query resolution for BNR Heart and Stroke BNR-Cancer registrarManages data collection and query resolution for BNR- Cancer Data ManagerDay to day management and maintenance of BNR database and data processing Data AbstractorIdentifies cases from sources and collects information from medical notes through completion of BNR case finding forms 28 day follow - up nurse Registered General Nurse who follow up cases at 28 days and 1 year after symptoms and refers to appropriate organizations

10. Implementing a national stroke registry in Barbados

11. Key areas Data Protectors Private, public, community, institutions, death registry, patients, medical staff Champion stakeholders, QEH, insurance, GPs, DO registry

12. Key areas Professional, technical and data Hardware & software Private, public, community, institutions, death registry, patients, medical staff

13. Key areas BNR Quality Assurance Capacity Building Must stand up to internal and external audit Staff resources and training

14. Key areas Data Protectors Must stand up to internal and external audit Staff, resources, training Professional, technical and data Hardware & software Brand awareness, literature, website Private, public, community, institutions, death registry, patients, medical staff Champion stakeholders, QEH, insurance, GPs, DO registry

15. 15

16. Early challenges Challenge/ThreatDetails/Resolutions Inadequate stakeholder support Engage the MoH and the support of the QEH Board Difficulties recruiting well trained personnel Initially thought of as an opportunity to train persons to high standards but persistent difficulties could convert into a high risk level. Implementing a comprehensive marketing strategy Creating brand awareness and ensuring the message is consistent and aimed at the various stakeholders

17. Early challenges Challenge/ThreatDetails/Resolutions Lack of legislative mandate for stroke The BNR team is working with the MoH to have stoke added to the notifiable diseases register No established research culture within health services Keep message on track that BNR is not a research project but a national surveillance programme Incomplete data recording within healthcare sector Need to establish the QEH as a main stakeholder in the project Uncertainty of funding after 2011 Highlights the importance of stakeholders and the need to promote the BNR as a ‘national institution’

18. BNR – Data collection process

19. BNR – Stroke Case definition WHO stroke definition: Rapidly developing clinical signs of focal/global loss of cerebral function, of presumed vascular origin, with symptoms lasting ≥ 24 hours or leading to death

20. Methods: BNR – CVD Data collection follows WHO’s STEPS Stroke Surveillance model –in hospital; fatal in community; non-fatal in community Abstraction triggered by notification –follow-up at 28 days and 1 yr post event Pre-printed CRFs scanned in after abstraction Medical staff assist with case definition

21. 21 How does it work? BNR Team Calls to QEH, GPs, polyclinics Notification of stroke, AMI Abstraction of data from patient notes Verification

22. 22 How does it work? On behalf of the Ministry of Health BNR Team Scanned onto BNR database Reports, Newsletters, etc. Analysis Abstraction of data from patient notes Notification of stroke, AMI Calls to QEH, GPs, polyclinics Verification

24. In QEH: Abstractors check Radiology & Rehab depts Admission & Discharge data A&E records Medical & surgical wards

25. Outside QEH: Abstractors Nursing homes Imaging & rehab services Bayview, District & Geriatric hospitals GP secretaries, polyclinics

26. Once the form has been designed, printed and filled in, by Data Abstractors it needs to be converted from paper to an electronic image. VERIFY EXPORT SECURE DATABASE Where images of original forms are also exported Once data have been verified they are automatically exported SUMMARY OF OVERALL DATA MANAGEMENT PROCESS Invalid or unrecognisable data are highlighted to Data Entry during verification proce ss

27. Notification challenges… Death records lag Lack of notifications - especially private sector physicians

28. BNR notification in QEH: the case-defining form (CDF)

29. The case-defining process in the QEH 1. Identify possible stroke/AMI 2. Obtain case-defining form 3. Complete case-defining form 4. Enter minimal information into Notification Book 5. Leave case-defining form in patient notes

30. What is the CDF? The case-defining form (CDF) A simple, easy-to-complete, one-page form* Clinician enters diagnostic information for stroke (on one side) or acute MI Placed on wards and other QEH depts Accompanied by notification book (log of cases) *With only 6 questions for stroke, 8 for AMI

31. How will the CDF help? For physicians, it will provide standardised diagnoses a focus for defining a case a reminder to notify the case to the BNR For the BNR, it will provide a reliable notification method simplified abstraction clear diagnoses

32. Stroke classification -Workshops required on classification -link to secondary diagnostics Death certification -stroke as CoD but ?year of stroke -workshops on death certification Community notification -motivating community practitioners Latest challenges: 2010

33. Achievements

34. 34 BNR – Stroke Main achievements Full staff Strong team management Newsletter, website Digicel Generation of data and reporting to MoH 28 day follow-up Regular workshops

35. 35 BNR – Stroke Further achievements Profile of stroke patients -for marketing, treatment guidelines -number of days from onset to care -number of patients admitted <24hr Gaps in post-stroke care being addressed -treatment guidelines

36. Validation of stroke death data Correlation of stroke subtype with secondary diagnostics Implement first stroke seminars -diagnosis -death certification -Update website with stroke AR information BNR – Stoke: next steps…

37. Thank you! ginapitts@cavehill.uwi.edu bnr.org.bb ginapitts@cavehill.uwi.edu