Embed Size (px)
Citation preview
Establishing the BNR – Stroke: Achievements and Challenges
CAREC/PAHO Curacoa,15-16 November 2010
Gina Pitts, BNR-CVD Registrar
Chronic Disease Research Centre, Jemmotts Lane,
Bridgetown Barbados
2
Overview
• BNR – Stroke background
• Challenges
• Achievements
On behalf of the Ministry of Health
strokepaper 1
BNRfunded
The past
2001 2002 2003 2004 2005 2006 2007
BROSbegins
strokepapers 2/3
BROSends
4
The Barbados National Registry for Chronic Non-communicable Disease (BNR)
An MoH initiative comprising three national surveillance systems
• Stroke (July 2008)
• Heart (acute MI) (July 2009)
• Cancer (July 2010)
First multi-chronic disease registry in the Caribbean
Why 3 registries?
Three registries: not three times the effort!• Data sources broadly similar
• Similar resource needs
• One data management system
- one database for CVD registries
6
BNR objectives
To collect timely and accurate national data on the occurrence of cancer, stroke and acute
myocardial infarction (AMI), in order to contribute to the prevention, control and treatment of these diseases in Barbados
7
Operational ManagementStructure
BNR Director(Epidemiologist)
Senior RegistrarCVD
Registrar BNR-Cancer Data Manager
Data abstractorStroke
Data abstractor Heart
Data abstractorCancer
28 day follow up
Nurse
Governance committees
Professional Advisory Board
Technical Advisory Board
Operational Structure of BNR in 2010
Statistician
Steno clerk/data entry
Clinical Directors
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
Roles and responsibilities
Role Responsibility
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
Implementing a nationalstroke registry in Barbados
Key areas
LegislationStakeholder Collaboration
Sources of information
BNR
Data Protectors
Private, public, community, institutions, death registry, patients, medical staff
Champion stakeholders, QEH, insurance, GPs, DO registry
Key areas
MarketingInformation technology
Management and
Governance
BNR
Professional, technical and data
Hardware & softwarePrivate, public, community, institutions, death registry, patients, medical staff
Key areas
Capacity Building
Quality Assurance
BNR
Must stand up to internal and external audit
Staff resources and training
Key areas
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
15
Early challenges
Challenge/Threat Details/Resolutions
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 stakeholders
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 track 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’
BNR – Data collection process
BNR – Stroke Case definition
WHO stroke definition: Rapidly developing clinical signs of
focal/global loss of cerebral function,
of presumed vascular origin,
with symptoms lasting ≥ 24 hours
or leading to death
Methods: BNR – CVD
• Data collection follows WHO’s STEPS Stroke Surveillance model– in hospital; fatal in community; non-fatal in community
• Abstraction triggered by notification– follow-up at 28 days and 1 yr post event
• Pre-printed CRFs scanned in after abstraction
• Medical staff assist with case definition
21
How does it work?
BNR Team
Calls to QEH,GPs, polyclinics
Notification of stroke, AMI
Abstraction of data from
patient notes
Verification
22
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 notesNotification
of stroke, AMI
Calls to QEH,GPs, polyclinics
Verification
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
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 are highlighted to Data Entry during verification process
Notification challenges…
• Death records lag
• Lack of notifications
- especially private sector physicians
BNR notification in QEH: the case-defining form (CDF)
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
What is the CDF?
The case-defining form (CDF)
• A simple, easy-to-complete, one-page form*
• Clinician enters diagnostic information for stroke
(on one side) or acute MI
• Placed on wards and other QEH depts
• Accompanied by notification book (log of cases)
*With only 6 questions for stroke, 8 for AMI
How will the CDF help?
For physicians, it will provide• standardised diagnoses
• a focus for defining a case
• a reminder to notify the case to the BNR
For the BNR, it will provide• a reliable notification method
• simplified abstraction
• clear diagnoses
• Stroke classification- Workshops required on classification- link to secondary diagnostics
• Death certification - stroke as CoD but ?year of stroke- workshops on death certification
• Community notification- motivating community practitioners
Latest challenges: 2010
Achievements
34
BNR – Stroke Main achievements
• Full staff• Strong team management• Newsletter, website Digicel • Generation of data and reporting to MoH• 28 day follow-up• Regular workshops
35
BNR – StrokeFurther achievements
• Profile of stroke patients - for marketing, treatment guidelines- number of days from onset to care- number of patients admitted <24hr
• Gaps in post-stroke care being addressed- treatment guidelines
• Validation of stroke death data
• Correlation of stroke subtype with secondary diagnostics
• Implement first stroke seminars- diagnosis - death certification- Update website with stroke AR information
BNR – Stoke: next steps…
