IMPROVING DATA FOR DECISION-MAKING IN
GLOBAL CERVICAL CANCER PROGRAMMES
INTRODUCTION TO IDCCP PROJECT
April 7, 2017
A
Mona Saraiya MD, MPH
Centers for Disease Control and Prevention
IDCCP
Disclosures
• No financial relationships or conflict of interest to disclose
Outline
• Background
• Rapid situational assessment of cervical cancer data
and data systems
• Population-based survey modules
• Patient and programme monitoring
• Facility-based surveys
• Costing analysis and planning for screening and
treatment
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Rationale
NEED
GOAL
A global absence of
standardized tools and
guidance, technical
expertise, and
implementation support
for countries that are
seeking to collect and
use high-quality data to
monitor, evaluate, and
improve their screening
and treatment programs
To improve and accelerate
the availability of data for
planning and improving
global cervical cancer
programs by gathering
information on data
systems at country level,
and by developing global
standards, tools, and
guidance
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Bill and Melinda Gates Foundation Grant Activities
Improving Data for Decision-Making in Cervical Cancer Programs
CDC Foundation
1. Data Systems
Assessment
Implementation
(Botswana, Kenya,
Zambia, Ethiopia, and
Guatemala)
CDC Division of
Global HIV/AIDS
and TB
2. Development of the IDCCP Toolkit
Part 1: Data Systems Assessment
CDC Division of Global HIV/AIDS and TB
Part 2: Population-based Survey Modules
3. Development of
Products for
Targeted
Dissemination
CDC Division of Cancer Prevention and Control
Web-based Knowledge
Management
Part 3: Facility-based Surveys
George W. Bush
Institute
CDC Division of Global HIV/AIDS and TB
Part 4: Patient and Programme Monitoring
CDC Division of Global HIV/AIDS and TB
Part 5: Costing Analysis and Planning
George W. Bush Institute
World Health Organization
4. Coordination
George W. Bush
Institute
World Health
Organization
Outcomes Evaluation
Protocol
CDC Division of
Global HIV/AIDS and
TB
World Health
Organization
Toolkit Components
TOOLKIT PART 1:
Rapid Situational
Assessment of
Cervical Cancer
Data and Data
Systems
TOOLKIT PART 5:
Comprehensive
Cervical Cancer
Costing Analysis
and Planning for
Screening and
Treatment
TOOLKIT PART 2:
Population-based
Survey Modules
for Cervical Cancer
TOOLKIT PART 4:
Facility-based
Surveys for
Cervical Cancer
Web-based
Knowledge
Management and
Data Platform
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
TOOLKIT PART 3:
Cervical Cancer
Patient and
Program
Monitoring
Patient Outcomes
Evaluation Protocol
PART 1: RAPID SITUATIONAL ASSESSMENT OF
CERVICAL CANCER DATA AND DATA SYSTEMS
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Rapid Situational Assessment of Cervical
Cancer Data and Data Systems
Documents the country landscape
Assesses existing data and data systems relevant to
cervical cancer
Provides country-specific recommendations to
inform the implementation of high-quality
monitoring, evaluation, and surveillance systems
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Rapid Situational Assessment of Cervical
Cancer Data and Data Systems
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Rapid Situational Assessment of
Cervical Cancer Data and Data Systems:
Domains and Areas of Focus
PART 2: POPULATION-BASED SURVEY MODULES
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Population-Based Survey Modules
Designed to assist low-and middle-income countries
to monitor key indicators and measures of cervical
cancer screening and treatment including:
Screening prevalence
Follow-up and treatment
Knowledge and awareness
Barriers and facilitators to screening
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Population-Based Survey Modules
Core module
Expanded module
Instructions for administering all probes and
questions
Recommendations on the inclusion of HPV testing
Methodological considerations
Example table shells
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Population-Based Survey Modules:
Core Module
Subject Area
Screening Prevalence
Screening Interval
Screening Result
Follow-up after
Abnormal/Positive/Unclear
Result
Indicators
Screening
C1: Percentage of women who have been
screened for cervical cancer
C2: Median number of years between first and
last screenings / Percentage of screened
women who were screened within the
recommended time frame
Result
C3: Percentage of screened women who
received a test result from their most recent
screening / Percentage of women that
received a specific result
Follow-up and Treatment
C4: Percentage of women with an abnormal
result who received follow-up or treatment
Questions
C1: Has a healthcare worker ever tested
you for cervical cancer?
C2: When was your last (most recent)
test for cervical cancer?
C3: What was the result of your last test
for cervical cancer?
C4: Did you have any follow-up visits or
receive any treatment to your cervix
because of your test result?
Population-Based Survey Modules:
Expanded Module
• Awareness of cervical cancer and cervical cancer
screening
• Age at first screening
• Screening and treatment location
• Barriers and facilitators to screening, follow up
and treatment
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
PART 3: PATIENT AND PROGRAMME MONITORING
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Patient and Programme Monitoring
Assists Governments and their partners to choose,
collect, systematically analyse and use data to:
Better plan, target, tailor, and scale interventions
Assess whether programmes are being
implemented with quality
Respond effectively when they are not
implemented as planned
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Patient and Programme Monitoring
Provides countries with the following essential resources for M&E:
•
Roles & Responsibilities for M&E
•
Indicators
•
Sample Client Screening Form and Data Elements Table
•
Sample Register and Data Elements Table
•
Sample Monthly Summary Form
•
Sample Annual Summary Form
•
DHIS 2 Module
•
Data Visualization Graph and Table Tools
•
Data Quality and Training Tools
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Patient and Programme Monitoring: Indicators
INDICATOR
G = Global; C = Core;
OPT = Optional
LEVEL
WHAT IT MEASURES
G N S F
G1.0 Screening Rate
Percentage of women aged 30-49 years screened for the
   
first time in a 12-month period
C1.0 Percent Screened
Percentage of women [within the target age range]
screened [for the first time] in a given time period
OPT1.1 Screened Within Proportion of total women screened for the first time
who were within the target age range
Target Age Range
  
 
OPT1.2 Progress Toward Percentage of screening target reached in the last [year,
quarter, month]
Target Screening Rate
  
Percentage of screen-positive women aged 30-49 years
with a positive result in a 12-month period
   
G2.0 Screening Test
Positivity Rate
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Patient and Programme Monitoring:
Client-level Data Collection Form
FACILITY AND VISIT INFORMATION
Facility name:
District:
Visit date:_____________________
 Screening
Purpose of visit:
Sample Client
Screening Form
which includes the
minimum data
elements, and some
optional elements,
for a programme
using VIA as
screening test, and
using cryotherapy or
LEEP for the
treatment of
precancerous lesions.
Provider name:
_______________________________________
 Treatment (Cryo or LEEP)
 Post-treatment Complication (Cryo or LEEP)
CLIENT INFORMATION
Client name:
Client identification number:
Phone:________________________ Client age: _______
Date of Last Menstrual Period: ____________
Physical address:
_
HIV Status
Last HIV Test Result:  Positive  Negative (< 3 months ago)
 Unknown (Negative [> 3 months ago], Inconclusive, or Never Tested)
Client Screening History
 Yes
Screened for cervical cancer in the past:
 No
 VIA
Result of past screening:
 Positive  Negative
If positive, was treatment performed?
 Yes
 No
 Not Sure
Type of treatment performed?
 Cryotherapy
 LEEP
 Not Sure
When was the last screening? Date: _____________
 Pap smear
 HPV DNA test
 Not Sure
If yes, screening was through:
 Results not received
 Not Sure
 Not Sure
Last treatment? Date: _____________
SCREENING
Screening visit type:
 First-time Screening
 Post-treatment Follow-up Screening at 1 year
Screening completed today?
 Yes (enter results below)
 Rescreening (after last screening was negative)
 No (list reason): __________________________________________________
VIA Result
Draw findings/lesion on cervix diagram below.
 Negative
 Positive
Eligible for cryotherapy?  Yes
 No
 Positive, Suspected Cancer
TREATMENT
FOR SCREENING VISIT
 Cryotherapy performed at screening visit
 Cryotherapy postponed (reason):____________________________
REFERRAL
FOR POSTPONED/REFERRED-IN CRYO VISIT
 Previously postponed cryotherapy performed today
 Referred-in cryotherapy performed today
 No treatment performed (reason): ____________________________
Referral to (name of site):
FOR LEEP/LARGE LESION REFERRAL VISIT
Eligible for LEEP:  Yes  No
LEEP performed today:  Yes  No (reason):_______________________
NOTES/FOLLOW-UP
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Reason for referral:  Cryotherapy
 Large lesion (not eligible for cryo)
 Suspected cancer
 Other Gynaecological Issue
Patient and Programme Monitoring:
Registry
CERVICAL CANCER SCREENING AND TREATMENT PROGRAM
FACILITY NAME: __________________
MONTH: __________________
INTAKE
Purpose of Visit
No.
Visit Date
Screening Treatment
A
B
C
SCREENING
Client Information
(tick applicable purpose)
Post-treatment
complication
Cryo
LEEP
D1
D2
VIA/CRYOTHERAPY/LEEP REGISTER
YEAR: _____________________________
Last HIV Test
Result
Client ID
Client Family Name
Client Given Name
Phone Number
Age
E
F
G
H
I
(tick one)
Screening
Provider
Initials
Pos Neg Unk
J1
J2
J3
K
REFERRAL
TREATMENT
Screening Completed
VIA Result
Reason
Cryotherapy
LEEP
(tick one)
(tick one)
(tick one)
(tick one)
(tick one)
First-time
screening
completed
Cryo
LEEP
1 year postCryo
Referred
Referred for
Postponed Referred-in Provider
Provider
treatment
Positive - Positive - Positive - Referred
performed
Rescreening
for
Referred
other
Cryo
cryo
cryo
LEEP
Initials Eligible for
Initials
follow-up
Negative eligible for not eligible Suspected for large
at
completed
suspected for cryo gynecological
postponed performed performed
LEEP
Performed
screening
cryo
for cryo
Cancer
lesion
screening
cancer
issue
today
today
completed
visit
L
M
N
O
P
Q
R
S
T
U
V
W
X
Y
1
2
Sample Register
for a VIA-based
programme which
uses cryotherapy
and LEEP for
treatment of
precancerous
lesions.
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
COLUMN
TOTALS+A52:Z53
KEY TOTALS (for
cross-check)
Total Unique Clients
Total unique individuals
seeking screening
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Total
Within Age
Range
Total
Unknown
Status
Total screened
(L + M + N)
Total positive (P + Q + R)
Total referrals (S + T + U + V)
Total cryotherapy procedures
(W + Y + Z)
Z
AA
AB
AC
AD
PART 4: FACILITY-BASED SURVEYS
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Facility-Based Surveys
Service Availability Tool: physical presence of
facilities or mobile clinics
Facility Readiness Assessment Tool: capacity or level
of readiness of a facility or mobile clinic
Supportive Supervision Tool: supporting health
personnel to provide quality services
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Facility-Based Surveys: Service Availability Tool
Service
Screening methods

Number of Facilities Offering Each
Service (A)
Insert number of facilities offering
each service
Service Availability
Total Number of Facilities (B)
A/B x 100
Total number of facilities
providing screening services (B)
VIA
VIA ______________

VIA _____________
VIA/VILI
VIA/VILI ____________

VIA/VILI ____________
Digital Cervicography
Digital Cervicography __________

Digital Cervicography ________
Pap
Pap ____________

HPV DNA Testing

Colposcopy (diagnostic)
Pap _____________
HPV DNA Testing _________
HPV DNA Testing __________
Colposcopy _____________
Cervical precancer treatment

Insert number of facilities offering
each service
Colposcopy __________
Total number of facilities
providing treatment services (B)
Cryotherapy
Cryotherapy _____________

LEEP

Thermal/Cold Coagulation
LEEP ________
Thermal/Cold Coagulation ________
Cryotherapy ________
LEEP __________
Thermal/Cold Coagulation _____
Facility-Based Surveys:
Facility Readiness Assessment Tool
#
1
2
Facility Readiness Category
Services
Service Utilization
Standard
Facility is providing the services it is designated to provide.
In a facility where services are currently being provided, screening and treatment targets are met.
3
Staffing
Sufficient numbers of trained providers are currently providing services to meet need.
4
Potential Staffing (if applicable)
5
6
Infrastructure
Procurement and Supply Chain
Sufficient number of providers are available who meet selection criteria to be trained in desired
skill and are available to provide services once trained.
Items are present and functional (include over the past 3 months).
A functional procurement and supply chain system is in place, as defined by the 4 items below.
7
Equipment and Supplies
8
Infection Prevention
9
10
Medicines and Laboratory
Data Management
11
12
Referral Mechanisms
Policies and Guidelines
13
Community Sensitization/Mobilization
Items are of sufficient quantity, continuously available, and functional (include over the past 3
months).
Items are continuously available and functional (include over the past 3 months).
Items are continuously available and accessible.
Items (materials and processes) are continuously available and functional (include over the past 3
months).
Referral mechanisms are clearly defined and functional.
Relevant and current national guidelines and policies are displayed or readily available, and well
understood.
In the last 3 months, the following activities have been continuously conducted and material
present.
Facility-Based Surveys:
Facility Readiness Assessment Tool
Readiness Status Colour
Readiness Category
Readiness
Score
(Place an “X” in the appropriate
box)
1.8 to 2.0 1.0 to 1.7
1. Services
2. Service Utilization
3. Staffing
4. Potential Staffing (if applicable)
5. Infrastructure
6. Procurement and Supply Chain
7. Equipment and Supplies
8. Infection Prevention
9. Medicines and Laboratory
10. Data Management
11. Referral Mechanisms
12. Policies and Guidelines
13. Community Sensitization/Mobilization
Overall Facility Readiness Score
(calculated average Category Readiness Scores)
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
0.0 to 0.9
Comments
Facility-Based Surveys:
Supporting Supervision Tool
Date of Visit:
Date of Most Recent Facility Readiness Assessment or Supportive Supervision Visit:
Assessment Team Members:
Name: ____________________
Title: ________________________
Name: ____________________
Title: _______________________
FACILITY SERVICES
Existing designated cervical cancer screening and treatment
services being provided (if any):
Planned additional cervical cancer screening and treatment services
being assessed for readiness (if any):

None

None

VIA

VIA

Cryotherapy

Cryotherapy

Pap

Pap

VIA/VILI

VIA/VILI

Digital Cervicography

Digital Cervicography

HPV DNA Testing

HPV DNA Testing

Colposcopy and Biopsy

Colposcopy and Biopsy

LEEP

LEEP

Thermal/Cold Coagulation

Thermal/Cold Coagulation
Facility-Based Surveys:
Supporting Supervision Tool
Status Colour
Performance Category
1. Provider Skill Performance
Provider Skill: VIA
Provider Skill: Cryotherapy
Provider Skill: LEEP
Provider Skill Performance Score (calculated average of the scores for each
skill)
2. Data Collection, Use, and Meeting Key Indicator Benchmarks Performance
Data Collection
Data Use and Meeting Key Indicator Benchmarks
Data Collection, Use, and Meeting Key Indicator Benchmarks
Performance Score (calculated average of the scores for each data sub-category)
3. Client and Community Assessments Performance
Client and Community Assessments Performance Score
Overall Performance Score
(calculated average of the Category Performance Scores)
(Place an “X” in the appropriate box)
Score
1.8 to 2.0
1.0 to 1.7
0.0 to 0.9
(Green)
(Yellow)
(Red)
PART 5: COSTING ANALYSIS AND PLANNING FOR
SCREENING & TREATMENT
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
Costing Analysis and Planning for Screening &
Treatment
ESTIMATE COSTS
• Programme & Patient-related
• Start-up & Recurring
• Financial & Economic
LOGICAL
PREDICT OUTPUTS
• Services Provided – Pre-cancer & Cancer
• Population Covered – HIV+
INVESTIGATE OPTIONS
• Service Package A vs. Service Package B
• Population 1 vs. Population 2
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES
TRANSPARENT
Next steps
Publication—pending WHO and CDC clearance
Translation—will be translated into Spanish
PAHO-initial forum to discuss the tools- interest in working closer with
select countries
Presentations at several meetingsDevelop case study for Asian Countries in Singapore—
-Plan to use in cancer control planning forums
-Population-based surveys are already using questions
THANK YOU!
The Improving Data for Decision-Making in Global Cervical Cancer Programmes consortium
members (US Centers for Disease Control and Prevention, the CDC Foundation, the George W. Bush
Institute, and the World Health Organization) developed the IDCCP Toolkit with extensive input
from subject matter experts and representatives of Ministries of Health.
Special thanks is given to: Indiana University, Jhpiego, Southern Methodist University, Levin and
Morgan, John Snow, Inc., CDC’s Division of Global HIV & TB’s General Population Surveillance team,
Pink Ribbon Red Ribbon; and the governments and Ministries of Health of Botswana, Ethiopia,
Georgia, Ghana, Guatemala, Kenya, Madagascar, Malawi, Nigeria, Senegal, Tanzania, Zambia, and
Zimbabwe, which generously collaborated in the development of the IDCCP toolkit.
The financial support of The Bill and Melinda Gates Foundation is gratefully acknowledged.
IMPROVING DATA FOR DECISION-MAKING IN GLOBAL CERVICAL CANCER PROGRAMMES