Diabetes surveillance in the English-speaking Caribbean

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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

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Is now the time?

• The right time?
• We run three registries
• Stroke
• Heart
• Cancer

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Political commitment to improvedPublic 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
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Public health initiatives TT
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And Bermuda
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And Barbados
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But diabetes data remain scarce

• In Barbados
• Between 11 000 and 27 000 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)

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The Caribbean challenge
Constraint
Possible solution
Think regionally
LIMITED FINANCES
We have no money
Its not cost-effective
LIMITED PERSONNEL
We have no staff
LIMITED EXPERTISE
Were not sure how
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The Caribbean region

• Area 2,754,000 km2
• Land mass
• With Guyana 9.8
• Without Guyana 2.0
• Population (CARICOM)
• With Haiti 15,236m
• Without Haiti 6,557m

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The Caribbean challenges
Bahamas 325,000
Jamaica 2,780,000
Montserrat 9,500
Barbados 270,000
Trinidad Tobago 1,056,000
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A Caribbean resource centre
Functions

• Coordinate funding opps
• Proposal development

Funding

• Coordinate regional training activities
• Training existing staff
• Recruitment

Personnel

• Resources for setup
• Data management / stats

Expertise
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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
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Diabetes surveillancethoughts

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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

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

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Diabetes goals

• Alternative selling points
• Economic
• Healthcare quality

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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

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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

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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

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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

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Operational ManagementStructure
Operational Structure of BNR in 2010
Governance committees Professional Advisory
Board Technical Advisory Board
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Roles and responsibilities
Role Responsibility
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 Director Responsible for technical direction and leadership of the BNR
Statistician Produces query reports and analysis data
Clinical Director Provides assistance with clinical query resolutions and is involved in promotional events
BNR-CVD registrar Provides day to day team leadership and liaison with other core staff. Manages data collection and query resolution for BNR Heart and Stroke
BNR-Cancer registrar Manages data collection and query resolution for BNR- Cancer
Data Manager Day to day management and maintenance of BNR database and data processing
Data Abstractor Identifies 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
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Early challenges
Challenge/Threat Details/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 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 2011 Highlights the importance of stakeholders and the need to promote the BNR as a national institution
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 stakehholders



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In QEH Abstractors check
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Outside QEH Abstractors
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Chronic NCDs
NCD deaths per 100,000
8 Caribbean nations in top 10
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Plan of action

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