Diabetes surveillance in the English-speaking Caribbean

Gina Pitts & Ian HambletonChronic Disease Research CentreThe 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 improvedPublic Health

“Health of theRegion, is the

Wealthof the Region”

-Nassau Declaration2001

CaribbeanCooperation in

Health(CCH)

CaribbeanCommissionOn Health&

Development

2007Declaration

Port of Spain:NCDs as Public Health Priority

UN SessionNCDs

Sept 2011

Public health initiatives… T&T

And Bermuda…

And Barbados…

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)

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 km2

• 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

Legislation

Stakeholder Collaboration

Sources of information

Marketing

Information technology

Management and Governance

Capacity Building

Quality Assurance

BNR

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 ManagementStructure

BNR Director(Epidemiologist)

Senior RegistrarCVD

Registrar BNR-Cancer

Statistician

Data Manager

Data abstractorStroke

Data Abstractor Heart

Data AbstractorCancer

Steno Clerk& data entry

Clinical Directors for Heart & Stroke

Clinical DirectorCancer

Governance committees

Professional Advisory Board

Technical Advisory Board

Operational Structure of BNR in 2010

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

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

In QEH: Abstractors check

Radiology &Rehab depts

Admission &

Discharge data

A&E recordsMedical &

surgical wards

Outside QEH: Abstractors

Nursing homesImaging & rehab

services

Bayview, District & Geriatric hospitals

GP secretaries,

polyclinics

Chronic NCDs

NCD deaths per 100,000

645

659

698

773

795

Trinidad

Ant igua

Barbados

Uruguay

Grenada

271

290

301

315

334

Guatemala

Paraguay

Venezuela

Panam a

Mexico

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