Diabetes surveillance in the English-speaking Caribbean Gina Pitts & Ian Hambleton Chronic Disease Research Centre The University of the West Indies IDB / EURODIAB Workshop, Brussels. Jan 23-25, 2011

Is now the time? The right time? We run three registries Stroke Heart Cancer

Political commitment to improved Public Health “Health of the Region, is the Wealth of the Region” -Nassau Declaration 2001 Caribbean Cooperation in Health (CCH) Caribbean Commission On Health& Development 2007 Declaration Port of Spain: NCDs as Public Health Priority UN Session NCDs Sept 2011

Public health initiatives… T&T

And Bermuda…

And Barbados…

But diabetes data remain scarce In Barbados: Between and with diabetes About 6% of population 9% of adults 16% of older adults And about 22% of the elderly Data static (and getting old) ICSHIB (1997) BES (2002)

The Caribbean challenge LIMITED PERSONNEL “We have no staff” Constraint LIMITED EXPERTISE “We’re not sure how” Think regionally… Possible solution LIMITED FINANCES “We have no money” “It’s not cost-effective”

The Caribbean region Area: 2,754,000 km 2 Land mass: –With Guyana: 9.8% –Without Guyana:2.0% Population (CARICOM) –With Haiti:15,236m –Without Haiti:6,557m

The Caribbean challenges Barbados: 270,000 Trinidad & Tobago: 1,056,000 Montserrat: 9,500 Jamaica: 2,780,000 Bahamas: 325,000

A Caribbean resource centre Funding Expertise Personnel -Coordinate funding opps -Proposal development -Coordinate regional training activities -Training existing staff -Recruitment -Resources for setup -Data management / stats Functions

A Caribbean resource centre Important economies of scale A focus on training / ongoing skill transfer In-house expertise / capacity building Small numbers of cases: Caribbean reports Develop action plan A set of goals and indicators to increase Caribbean participation

Diabetes surveillance: thoughts

Healthcare in Barbados Healthcare “free for all” EIGHT polyclinics ONE hospital But 60% of people choose private primary care Public tertiary care then used if really sick

Key BNR considerations 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

Is diabetes different? BNR registries are “active” surveillance BNR registries are population based – the conditions lend themselves to this. Stroke or AMI – must go to hospital… People with diabetes shop around So population registry not a goal

Diabetes goals Alternative selling points: Economic Healthcare quality

Economic goals How much is spent on diabetes medication? Do electronic data exist? Possibly… Free (and so recorded) medication use National ID Formal arrangements for data extraction with Government Record linkage – technical considerations

Healthcare quality goals Quality of tertiary healthcare? Hospital Diabetes Clinic Development of new data collection system Linkage of system to economic data The sickest… Quality of primary care A single Polyclinic Have existing database system

Potential use of data – I Clinical outcome, care/treatment Baseline data for assessment of future trend –use of diagnostic tools, survival, disability Evaluation of interventions –new/complex therapies, prevention Access to/utilisation of health services –private vs public, rehabilitation services

21 Potential use of data – II Clinical practice Indicate where treatment/facilities most need improvement Identify specialist training needs Provide information to MoH for optimal utilisation of scarce resources

22 Operational Management Structure BNR Director (Epidemiologist) Senior Registrar CVD Data abstractor Stroke Data Abstractor Heart Clinical Directors for Heart & Stroke Registrar BNR-Cancer Data Abstractor Cancer Clinical Director Cancer Data Manager Statistician Steno Clerk & data entry Governance committees Professional Advisory Board Technical Advisory Board Operational Structure of BNR in 2010

Roles and responsibilities RoleResponsibility Professional Advisory BoardProvides support and advise regarding fulfillment of BNR Objectives Technical Advisory CommitteeProvides 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 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 nurseRegistered General Nurse who follow up cases at 28 days and 1 year after symptoms and refers to appropriate organizations

Early challenges Challenge/ThreatDetails/Resolutions Lack of legislative mandate for strokeThe 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 tract 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 2011Highlights the importance of stakeholders and the need to promote the BNR as a ‘national institution’ Inadequate stakeholder supportEngage 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 stakehholders

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

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

Chronic NCDs NCD deaths per 100,000 8 Caribbean nations in top 10

Plan of action Gap analysis Availability of electronic information Feasibility study QEH diabetes clinic and Single Polyclinic Identify and approach stakeholders Develop working model