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

2. 2 Overview Background Notification process BNR– Case reporting forms BNR-Data process BNR-Data outcomes

3. Ethics Ethical approval obtained from IRB All BNR staff sign confidentiality agreements Highest international standards of data encryption and storage for full confidentiality Secure database Patient consent for interviews

4. Notification Process

5. How does it work? Notification Abstraction At time of event 28 days later 1 year later Active process - data abstractors -contacting data sources -By patients – self reporting Over-notification expected Passive process -Data sources -Medical staff

6. 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

7. Summary of Notification and Data abstraction Methods for data collection in BNR – Stroke WHO-SSS model Abstraction triggered by notification of minimal data Abstraction immediately follows notification Follow-up at 28 days and 1 yr post event Medical staff assist with case definition

8. Case reporting form design

9. Cardiff teleform Cardiff Teleform Form Designer Flexible Document Input Options View and index non-image file types Content-based classification Automatic data extraction

10. Summary of Notification and Data abstraction

11. CRF Design On behalf of the Barbados Ministry of Health Bar codes: for unique Form ID which can be read from scanned images

12. Form Design I Bar codes: for unique Form ID which can be read from scanned images for unique Event ID numbers of data abstraction forms Optical Character Recognition Text & Number fields: where upper/lower case text or number are read - one character per box

13. Form Design II On behalf of the Barbados Ministry of Health Optical Mark Recognition Choice fields: simple or multiple option fill boxes

14. CRF Design On behalf of the Barbados Ministry of Health Bar codes: for unique Event ID numbers of data abstraction forms Optical Character Recognition Text & Number fields: where upper/lower case text or number are read - one character per box Range from 10001 – 99999 for each form

15. CRF Design On behalf of the Barbados Ministry of Health Image zone / signatures recognize if a form has been signed or not Capture images or data from other option text fields Optical Mark Recognition Choice fields: simple or multiple option fill boxes

16. Verification and validation Verification Ensure what is written on form is represented on electronic image Validation That data entered is sensible and reasonable On behalf of the Barbados Ministry of Health

17. Consistency checks To clean data - for each registered patient Within form – all relevant data is present and have not been missed Between forms – all relevant forms and sections have been completed Between events – all patient events are present On behalf of the Barbados Ministry of Health

18. 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 has been verified it is automatically exported SUMMARY OF OVERALL DATA MANAGEMENT PROCESS Invalid or unrecognisable data is highlighted to Data Entry during verification process

19. In-house database features Advanced Search facility find unique patient identification number of registered patients look up patient status – admitted, discharged, community, consented, follow-up, alive or dead cross check with cancer and heart and stroke databases for patient events generate reports

20. Archive I Storage of Paper Forms Details of patient event(s) on Forms B1, B2, B3, B4, C1 and C2 and are stored in locked cabinets after being scanned All patient identifiable data is recorded on Form A in separate locked cabinet

21. Archive II Storage of Electronic Database Database is stored on 2 servers & copy of back up of server will be stored on CD/DVD for long term storage in a locked safe Passwords & Encryption No access to database without passwords & all data that are placed on servers will be encrypted

22. Summary Barcode(s) to print and track forms Forms are checked by processes of verification & validation to ensure clean data Forms are stored in secure locked cabinets Database is password protected and encrypted on server

23. BNR – Stroke 2009 outcomes

24. Barbados National Registry for Chronic Non-Communicable Disease Your registry, your health 2009 – 2010 Annual Report Barbados National Registry for Chronic Non-Communicable Disease Your registry, your health

25. Annual report outcomes Executive summary -linked to reporting obligations on behalf of the MoH : Total number of registrations as a proportion of the population Total number of hospital admissions as a proportion of registrations Total number of deaths as a proportion of registrations Average length of hospital stay (in days).

26. Stroke outcomes Incidence Demographic characteristics Presentation and diagnosis data Mortality Conclusions and recommendations Strategic objectives for 2010-2011

27. Key points 35 stokes/month registered Median length of hospital stay: 5 days ¼ stroke patients discharged within 24 hrs ¼ stroke patients died before being discharged Fewer first-ever strokes (205) than expected -1/3 had no documentation on prior stroke -very few community notifications

28. Stroke number/100 000 by age and sex (Jan-Dec 2009)

29. Thank you ginapitts@cavehill.uwi.edu bnr.org.bb ginapitts@cavehill.uwi.edu