BNR – Stroke: data entry and data management

CAREC/PAHO Curacoa,15-16 November 2010

Gina Pitts, BNR-CVD Registrar

Chronic Disease Research Centre, Jemmotts Lane,

Bridgetown Barbados

2

Overview

• Background

• Notification process

• BNR– Case reporting forms

• BNR-Data process

• BNR-Data outcomes

Ethics

• Ethical approval obtained from IRB

• All BNR staff sign confidentiality agreements

• Highest international standards of data encryption and storage for full confidentiality

• Secure database

• Patient consent for interviews

Notification Process

How does it work?

Notification Abstraction

• At time of event • 28 days later• 1 year later

• Active process- data abstractors- contacting data sources- By patients – self

reporting

Over-notification expected

• Passive process- Data sources- Medical staff

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

Summary of Notification and Data abstraction

• Methods for data collection in BNR – Stroke WHO-SSS model

• Abstraction triggered by notification of minimal data

• Abstraction immediately follows notification• Follow-up at 28 days and 1 yr post event• Medical staff assist with case definition

Case reporting form design

Cardiff teleform

• Cardiff Teleform• Form Designer

• Flexible Document Input Options

• View and index non-image file types

• Content-based classification

• Automatic data extraction

Summary of Notification and Data abstraction

CRF Design

On behalf of the Barbados Ministry of Health

Bar codes: for unique Form ID which can be read from scanned images

Form Design IBar codes: for unique Form ID which can be read from scanned images

for unique Event ID numbers of data abstraction forms

Optical Character Recognition

Text & Number fields: where upper/lower case text or number are read - one character per box

Form Design II

On behalf of the Barbados Ministry of Health

Optical Mark Recognition Choice fields: simple or multiple option fill boxes

CRF Design

On behalf of the Barbados Ministry of Health

Bar codes: for unique Event ID numbers of data abstraction forms

Optical Character Recognition

Text & Number fields: where upper/lower case text or number are read - one character per box

Range from 10001 – 99999 for each form

CRF Design

On behalf of the Barbados Ministry of Health

Image zone / signatures recognize if a form has been signed or not

Capture images or data from other option text fields

Optical Mark Recognition

Choice fields: simple or multiple option fill boxes

Verification and validation

Verification•Ensure what is written on form is represented on electronic image

Validation •That data entered is sensible and reasonable

On behalf of the Barbados Ministry of Health

Consistency checks

To clean data - for each registered patient

• Within form – all relevant data is present and have not been missed

• Between forms – all relevant forms and sections have been completed

• Between events – all patient events are present

On behalf of the Barbados Ministry of Health

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 has been verified it is automatically exported

SUMMARY OF OVERALL DATA MANAGEMENT

PROCESS

Invalid or unrecognisable data is highlighted to Data Entry during verification process

In-house database features

Advanced Search facility•find unique patient identification number of registered patients

•look up patient status – admitted, discharged, community, consented, follow-up, alive or dead

•cross check with cancer and heart and stroke databases for patient events

•generate reports

Archive I

Storage of Paper Forms•Details of patient event(s) on Forms B1, B2, B3, B4, C1 and C2 and are stored in locked cabinets after being scanned

•All patient identifiable data is recorded on Form A in separate locked cabinet

Archive II

Storage of Electronic Database•Database is stored on 2 servers & copy of back up of server will be stored on CD/DVD for long term storage in a locked safe

Passwords & Encryption•No access to database without passwords & all data that are placed on servers will be encrypted

Summary

• Barcode(s) to print and track forms• Forms are checked by processes of verification

& validation to ensure clean data• Forms are stored in secure locked cabinets• Database is password protected and

encrypted on server

BNR – Stroke 2009 outcomes

Barbados National Registry for Chronic Non-Communicable DiseaseYour registry, your health

2009 – 2010 Annual Report

Barbados National Registry for Chronic Non-Communicable Disease

Your registry, your health

Annual report outcomes• Executive summary

- linked to reporting obligations on behalf of the MoH :

• Total number of registrations as a proportion of the population• Total number of hospital admissions as a proportion of

registrations• Total number of deaths as a proportion of registrations• Average length of hospital stay (in days).

 

Stroke outcomes

• Incidence• Demographic characteristics• Presentation and diagnosis data• Mortality• Conclusions and recommendations• Strategic objectives for 2010-2011

Key points

•35 stokes/month registered

•Median length of hospital stay: 5 days

•¼ stroke patients discharged within 24 hrs

•¼ stroke patients died before being discharged

• Fewer first-ever strokes (205) than expected- 1/3 had no documentation on prior stroke- very few community notifications

Stroke number/100 000 by age and sex (Jan-Dec 2009)

05001000150020002500300035004000

0102030405060708090

20-29 30-39 40-49 50-59 60-69 70-79 80-89 90+

Num

ber o

f cas

es

Age-group (years)

No cases (female)

No. cases (male)

incidence rate (female)

incidence rate (male)

Thank youginapitts@cavehill.uwi.edu

bnr.org.bb