1. Achievements and challenges regarding the operations of the Heart and Stroke Registry & the National CNCD Commission in Barbados On behalf of the Ministry of Health Anselm Hennis, Professor of Medicine and Epidemiology Director, Chronic Disease Research Centre University of the West Indies

2. The Caribbean

3. Barbados

4. 4 Declaration of Port of Spain: Uniting to stop the Epidemic of Chronic NCDs We, the Heads of Government of the Caribbean Community (CARICOM), meeting at the Crowne Plaza Hotel, Port-of-Spain, Trinidad and Tobago on 15 September 2007 on the occasion of a special Regional Summit on Chronic Non-Communicable Diseases (NCDs); On behalf of the Ministry of Health

5. 5 Declaration of Port of Spain: Uniting to stop the Epidemic of Chronic NCDs Conscious of the collective actions which have in the past fuelled regional integration, the goal of which is to enhance the well-being of the citizens of our countries; Recalling the Nassau Declaration (2001), that “the health of the Region is the wealth of Region”, which underscored the importance of health to development; Inspired by the successes of our joint and several efforts that resulted in the Caribbean being the first Region in the world to eradicate poliomyelitis and measles; On behalf of the Ministry of Health

6. 6 Declaration of Port of Spain: Uniting to stop the Epidemic of Chronic NCDs Affirming the main recommendations of the Caribbean Commission on Health and Development which included strategies to prevent and control heart disease, stroke, diabetes, hypertension, obesity and cancer in the Region by addressing their causal risk factors of unhealthy diets, physical inactivity, tobacco use and alcohol abuse and strengthening our health services; Impelled by a determination to reduce the suffering and burdens caused by NCDs on the citizens of our Region which is the one worst affected in the Americas; On behalf of the Ministry of Health

7. 7 Declaration of Port of Spain: Uniting to stop the Epidemic of Chronic NCDs Fully convinced that the burdens of NCDs can be reduced by comprehensive and integrated preventive and control strategies at the individual, family, community, national and regional levels and through collaborative programmes, partnerships and policies supported by governments, private sectors, NGOs and our other social, regional and international partners; Declare………………….. All small steps on the road to the UN Summit of 2011 which will only succeed with the support of the entire Region…… On behalf of the Ministry of Health

8. 8 Declaration of Port of Spain: National CNCD Commissions That we strongly encourage the establishment of National Commissions on NCDs or analogous bodies to plan and coordinate the comprehensive prevention and control of chronic NCDs Barbados National Chronic Non-communicable Disease Commission established in 2007 On behalf of the Ministry of Health

9. 9 Achievements of the National CNCD Commission National Strategic Plan 2009-2012 for combating CNCDs Spearheaded ‘No Smoking’ initiatives – no smoking in public places legislation enacted as of October 01, 2010 Co-sponsorship of the Healthy Caribbean Coalition 2008 conference – now a major NGO: www.healthycaribbean.org www.healthycaribbean.org National Nutrition Improvement and Population Salt Reduction Programme Caribbean Wellness Day Oversight of the Barbados National Registry On behalf of the Ministry of Health

10. Chronic non communicable disease in Barbados Surveillance and registries The BNR –enhancing chronic disease management in Barbados Background to the BNR BNR implementation and methods Challenges and achievements Summary The Barbados National Registry for CNCD Researching for a healthier Barbados

11. Chronic Non-communicable Diseases (CNCDs) Most common and costly health problems Yet the most preventable Treatment does not usually result in a cure High and prolonged burden on individual and state Researching for a healthier Barbados

12. WHO projected global deaths to 2030 (millions)

13. Worldwide, CNCDs are increasing in incidence and mortality Global deaths, 2001 (thousands)

14. CNCD deaths in LAC CNCD deaths per 100,000 8 Caribbean nations in top 10

15. Risk factors for CVD in Barbados I Who has diabetes in Barbados? Research has shown this to be: 6% of entire population (all ages) 9% of all adults (≥ 15 years) 16% of older adults (≥ 45 years) 22% of the elderly (≥ 65 years)

16. Risk factors for CVD in Barbados II Who has hypertension in Barbados? Research has shown this to be: One-fifth of entire population (all ages) One-third of all adults (≥ 15 years) One half of older adults (≥ 45 years) Two-thirds of the elderly (≥ 65 years)

17. CNCDs leading causes of illness and death since 2003 –heart attack and stroke alone responsible for 1/3 deaths – 200 amputations from all causes annually; –2 nd highest amputation rate in diabetic women worldwide (Hennis et al. Diabetes Care 2004;27:2636) Impact of CNCDs on health in Barbados I Researching for a healthier Barbados

18. CNCDs lead to Poor clinical outcomes –1/3 with heart attack die in 2 weeks –1/3 with stroke die in 4 weeks (Corbin et al. Stroke 2004;35:1254) –2/3 amputations in PWD die within 1 year – highest mortality after amputation reported worldwide (Hambleton et al. Diabetes Care. 2009;32:306). Impact of CNCDs on health in Barbados II Researching for a healthier Barbados

19. 19 History of the BNR BROS (2001-4): research study run by the CDRC; collaborators Kings College London –first-ever strokes –about 3 every 2 days in Barbados –most patients (68%) admitted to hospital –only half of these patients will be alive 1 year later –CMO’s report (2002-3) –stroke, heart attack and cancer leading causes of illness and death in Barbados On behalf of the Ministry of Health

20. 20 History of the BNR National CNCD Commission (2007) P-o-S Declaration (HoG meeting 2007) –underscored high importance of CNCDs to region UWI/CDRC and MoH sign contract (2007) –4-year EU funding to develop/operate national CNCD registry On behalf of the Ministry of Health

21. 21 Surveillance Providing information for action through ongoing data collection, collation, analysis and dissemination of results Researching for a healthier Barbados

22. 22 Registries Register: data file of health-related events –different data sources: comprehensive coverage –long-term (follow-up) Registry: system of ongoing registration – the ‘gold standard’ for surveillance – more timely than vital statistics data Researching for a healthier Barbados

23. 23 A surveillance registry Is not individual, but hospital-based or population-based Is not a patient management register Is not a research study –but can be used to select cases for future research studies Researching for a healthier Barbados

24. 24 A chronic disease registry A type of surveillance registry Paints a picture of who has the disease –in a standardised, timely manner Ensures timely and focused support –permits policy-makers to be proactive in managing care –providing information for patient groups who will most benefit healthcare management evaluation Researching for a healthier Barbados

25. 25 How a registry can enhance management: I Ensures standardisation Case definitions Diagnostic tools Consistency of recording/reporting Systematic coding (e.g. for cancer registry) Researching for a healthier Barbados

26. 26 How a registry can enhance management: II Ensures best practice Creation of protocols/guidelines When it is known that records will be abstracted –better adherence to guidelines –improved diagnostic assessments Supports quality assurance – identification of training needs Researching for a healthier Barbados

27. 27 How a registry can enhance management: III Changes/improves care Provides an evidence base –highlighting areas needing change/improvement Patient outreach programmes –provides follow-up care –identifies rehabilitation needs Case finding for research –e.g. studies on innovative treatment Researching for a healthier Barbados

28. 28 Other CVD registries OXVASC – Oxford UK GRACE – Global registry of acute coronary events MONICA South London Stroke Registry ERMANCIA – Martinique; Iquique – Chile; Joinville - Brazil Researching for a healthier Barbados

29. 29 The Barbados National Registry for Chronic Non-communicable Disease (BNR) Comprises three national surveillance systems Stroke (July 2008) Heart (acute MI) (July 2009) Cancer (July 2010) On behalf of the Ministry of Health

30. Why 3 registries? Three registries: not three times the effort! Data sources broadly similar Similar resource needs Modular system One data management system Data management Teleform – initial outlay then low running costs One database for CVD registries On behalf of the Ministry of Health

31. 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 is highlighted to Data Entry during verification process

32. 32 The BNR: Primary objective To collect timely and accurate national data on the occurrence of cancer, stroke and acute myocardial infarction, in order to contribute to the prevention, control and treatment of these diseases in Barbados On behalf of the Ministry of Health

33. 33 BNR-Stroke and -Heart methodology: 3 steps Step 1 Patients admitted to hospital Step 2 Patients who have died‏ Step 3 Patients treated in community only, or discharged from A&E without admission On behalf of the Barbados Ministry of Health

34. 34 BNR-Stroke and -Heart methodology: 3 steps Step 1 Patients admitted to hospital Step 2 Patients who have died‏ On behalf of the Barbados Ministry of Health BNR – Heart

35. 35 How does it work? On behalf of the Ministry of Health BNR Team Calls to QEH, GPs, polyclinics Notification of stroke, AMI Abstraction of data from patient notes Verification

36. 36 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

37. 37 In QEH: Abstractors check Radiology & Rehab depts Admission & Discharge data A&E records Medical & surgical wards On behalf of the Ministry of Health

38. 38 Outside QEH: Abstractors Nursing homes On behalf of the Ministry of Health Imaging & rehab services Bayview, District & Geriatric hospitals GP secretaries, polyclinics

39. 39 GP secretaries, polyclinics Outside QEH: Abstractors Nursing homes On behalf of the Ministry of Health Imaging & rehab services Bayview, District & Geriatric hospitals BNR Hotline Number: 256-4BNR BNR Hotline kindly sponsored by Digicel

40. Provided baseline information on – incidence, mortality – characteristics of stroke, acute MI patients The BNR: the first year’s data On behalf of the Barbados Ministry of Health

41. Preliminary data – incidence On behalf of the Ministry of Health

42. 42 Stroke preliminary data: age & in-hospital mortality 91% women 88% men are ≥ 50 yrs Alive at hospital discharge: 58/78 (74%) Number of stroke patients registered in Barbados by age- group and sex, Jan-Sept 2009 (N=307)

43. Acute MI preliminary data: age & in-hospital mortality 43 26% men with AMI are < 50 yrs, vs 10% women Number of AMI patients registered in Barbados by age- group and sex, May-December 2009 (N=81) Alive at hospital discharge: 59/75 (79%)

44. Provided baseline information on – incidence, mortality – characteristics of stroke, acute MI patients – hospital bed use (including ICU) cost estimates – diagnostics, treatment – ambulance use, times to hospital The BNR: the first year’s data On behalf of the Barbados Ministry of Health 63% of AMI patients

45. Series of seminars – improving acute MI diagnosis in Barbados Plan for future seminars – stroke diagnosis – completing a death certificate The BNR: better care through identification of training needs On behalf of the Barbados Ministry of Health

46. 46 Key challenges Initial Ethical Approval Quality of records – –5 reviews to confirm 4 strokes; 4 coronary event reviews to confirm 1 heart attack; access to information Notification from the private sector – expected 33%; achieved <5% Widespread publicity and public acceptance Longterm sustainability & translation of results On behalf of the Ministry of Health

47. Initially provided descriptive information –baseline data: No. cases, deaths –access to services, diagnostics, treatment… –identified gaps, training needs for health professionals Further studies using BNR as baseline –evaluate CNCD healthcare issues in detail –cost, risk factors –reason(s) for poor outcomes Allows us to measure impact of future interventions –finding public health strategies which work (or improvements), leading to positive change The BNR achievements: Impacting on health On behalf of the Barbados Ministry of Health

48. Earlier estimates show –need for CNCD registry in Barbados high prevalence of CVD and risk factors Surveillance registries can provide – systematic data collection –information on incidence, mortality, etc. – enhancing care through identification of training needs – data still preliminary: more to come Summary On behalf of the Barbados Ministry of Health

49. 49 Summary CNCD epidemic affecting Barbados BNR: a Barbados MoH initiative –first multi-CNCD registry in Caribbean Challenges –private sector notifications –publicity Achievements –baseline data on CNCD burden –highlighted gaps in management (areas for training) –important springboard for future intervention studies On behalf of the Ministry of Health