NASIRU I. BARDA DATA COLLECTION TOOLS FOR EMTCT.ppt

EMTCT Programme Monitoring at the Healthcare Facility Level
Presented by Nasiru Ibrahim Barda
( MPH, CC WHO )
13th January, 2022
DATA COLLECTION TOOLS FOR
EMTCT

Introduction:
A monitoring and evaluation system is needed to assess both structural and
health sector components of the response to HIV in key populations. It is critical
that these systems are practical, not overly complicated, and that they collect
information that is current, useful and readily used.
The goal of EMTCT (Elimination mother to child transmission) programmes is to
ensure that MTCT of HIV and/or syphilis is controlled and reduced to a very low
level, such that it ceases to be a public health problem. The same principle has
been applied to elimination programmes for several other diseases, including
leprosy , onchocerciasis, lymphatic filariasis, dracunculiasis, and maternal and
neonatal tetanus.
Validation indicators and targets should be used to monitor achievement of
EMTCT over a defined period of time. The processes in place for determination of
validation are designed to assess the quality and ability of the national monitoring
and surveillance system to detect the large majority of MTCT cases, in public and
private health facilities. Finally, they should assess the capacity of national
programmes and health systems to sustain the EMTCT targets and indicators for
validation.

Introduction:
Monitoring and evaluation frameworks and systems need to be
adapted to collect and analyse information to track the
implementation and impact of new recommendations. Monitoring
and evaluation will help programme managers to assess the
effectiveness of interventions and linkages between services along
the cascade of treatment and care for HIV and associated
conditions. Such information is essential to detect and respond to
bottlenecks or gaps in programme performance and to adequately
characterize and respond to patient attrition.
As programmes mature, monitoring individual- and population-
level outcomes, including toxicity and adverse events, drug
resistance, viral suppression, mortality, survival and incidence, is
also essential to assess the impact of programmes.

What is Monitoring?
Monitoring is the routine tracking of key elements of a
Programme or project and its intended outcomes. It usually
includes information from record keeping and surveys – both
population and client-based.
Monitoring is the systemic process of collecting, analyzing
and using of information to track a programme's progress
toward reaching its objectives and to guide management
decisions.
Monitoring is done on daily basis, weekly, Monthly, Quarterly
or Annually of any activity’s progress by systematically
gathering and analyzing data and information.

What is Evaluation
Evaluation is a rigorous, scientifically-based collection of information
about programme activities, characteristics, and outcomes that
determine the merit or worth of a specific programme. Evaluation
studies provide credible information for use in improving programmes,
identifying lessons learnt, and informing decisions about future
resource allocation. An evaluation can use a quantitative approach (e.g.
structured or standardized approaches for collecting numerical or
categorical data, such as surveys, questionnaires and checklists,
busing experimental or quasi-experimental design), a qualitative
approach (e.g. semi structured data collection, such as interviews,
focus groups and observation), or a mix of both approaches.
Evaluation is the structured interpretation and giving of meaning to
predicted or actual impacts of proposals or results. So evaluation is
done to determine the worthiness' or fitness of EMTCT programme.

Monitoring and Evaluation
Monitoring and evaluation (M&E) plan – comprehensive planning
document for all M&E activities. $e plan documents the key M&E
questions to be addressed, including what indicators are collected;
how, how often, from where and why they will be collected; what
baselines, targets and assumptions will be included; how the
indicators are going to be analysed or interpreted; and how or how
often reports will be developed
and distributed on these indicators.

PROPOSED TIMEFRAME FOR
CONDUCTING M&E ACTIVITIES AT EACH
LEVEL

RECORD KEEPING AND DATA
MANAGEMENT
 Data management refers to the collection, storage,
processing / analysis, dissemination and efficient use of
information in the context of monitoring and evaluation. Data
collection may take place on an ongoing basis, at regular
intervals, or as part of a one-off evaluation.
 Record-keeping refers to the systematic recording of
information in standardised formats. It is sometimes also
understood to mean the storage of such information

IMPORTANCE OF RECORD KEEPING
AND DATA COLLECTION
Data collection is the ongoing systematic process of
gathering, analyzing and interpreting various types of
information from various sources. In general, data collection is
done for research purposes in order to understand the full
picture of an area of interest and to build a foundation for
decision-making.
Data is divided into two types:
 Quantitative — in the form of numbers, e.g. percentages, comparison, etc.
 Qualitative — in the form of words, e.g. description of quality, appearance, etc
Data collection in healthcare allows health systems to create holistic
views of patients, personalize treatments, advance treatment
methods, improve communication between doctors and patients,
and enhance health outcomes

IMPORTANCE OF RECORD KEEPING
AND DATA COLLECTION
 They form the essential basis of monitoring, implementation and
evaluation.
 They safeguard against violations of rights.
 Process and outcomes of diversion and alternatives must be
clearly documented to ensure transparency, accountability and
follow-up where necessary.
 Systematisation and clear documentation of policies and
procedures are essential to draw clear lessons from
programmes and facilitate scaling-up or replication.
 Quality data collection for diversion and alternatives
programmes can help to stimulate / improve the collection of
reliable statistical data for the child justice system as a whole.

KEEPING AND DATA
COLLECTION
Use of data for communication purposes: Develop simple,
user-friendly documentation about the programme tailored to
relevant audiences, e.g. children, parents, victims/survivors,
communities, justice professionals and the general public /
media to assist advocacy and facilitate informed consent of
children and their guardians to participate.
Accurate data collection helps keep the important work of
EMTCT programmes on target.

TYPE OF REPORT AND PLACE
GENERATED
 Type of Report
 Place Generated
Individual
Records
Daily
Register
Monthly
Summary
Reports
Quarterly
National
Reports
Annual
National/ Global
Reports
Facility Facility
Facility/
Local
Government
Area
State/
National
National/ Global

CHARACTERISTICS OF AN EMTCT
PROGRAMME MONITORING SYSTEM
A monitoring and evaluation system is needed to assess
both structural and health sector components of the response
to HIV in key populations. It is critical that these systems are
practical, not overly complicated, and that they collect
information that is current, useful and readily used.
WHO and UN partner agencies have developed frameworks
for monitoring the response to HIV in the general population
and key populations. Each of these frameworks recommends
a set of national-level indicators. These indicators assess key
factors related to the enabling environment; measure the
availability, coverage and quality of specific interventions; and
examine their outcome and impact.

CHARACTERISTICS OF AN EMTCT
PROGRAMME MONITORING SYSTEM
The indicators can also be used when preparing proposals or
reporting progress to donor organizations. The M&E process
requires data from a variety of sources, including behavioural
and sero-surveillance surveys, programmatic and
administrative data, as well as information gathered through
reviewing policy documents and legislation and consultation
with experts and stakeholders. The quality and limitations of
these data should be assessed and considered when
undertaking analysis and interpretation.

Process of data integration and summary
of findings and resulting intervention
Analysis
of data at
district
level
Strengthen data
Collection on &
analysis at health
facility level
v
Analysis of
data
at facility
level Targeted
programme
strengthening
to areas of
greatest need
Evidence
Attribute
Mapping
Data
Quality
Assessme
nt
PMTCT
Cascade
Data Layering
Analysis
Data Driven
Intervention
Design
Improved
demand for
data
at facility level
Modeling
Programm
e Data
Researc
h Data
Findings
1. Data integration is feasible
2. There is facility-level
variability
in implementation of services
3. There are gaps in post-
delivery
cascades for mothers and
babies
Details of data strengthening intervention

USING MONITOING DATA FOR
INTERVENTION RELATED DECISION
MAKING
Reliable and accurate public health information is essential for monitoring health
and for evaluating and improving the delivery of health-care services and
programmes.As countries report their progress towards achieving the United
Nations Millennium Development Goals, the need for high-quality data has never
been greater.Furthermore, funding and support for public health activities, such as
immunization programmes, remain contingent on demonstrating coverage using
routine statistics. However, assuring the quality of health information systems
remains a challenge.
Although HIV testing is essential for delivering interventions for the prevention
of mother-to-child transmission (PMTCT) and thereby for reducing maternal and
infant mortality,routinely available health information indicates that the HIV testing
rate is highly variable.The questionable accuracy and reliability of these data
compromise efforts to improve the health-care systems that provide PMTCT
interventions.

MAKING
Routine health data from the primary health-care system which is organized in
districts, are collected and stored in the District Health Information System
(DHIS). Recent studies of this system, however, have reported that the quality of
the data, including those used to track PMTCT care, is suboptimal and is
hindering efforts to strengthen service delivery
Routine data collection for the DHIS in Nigeria starts with information being
collected in registers at each point where clinical care is provided. Every month
the staff at the different primary health-care facilities collate the data and send
monthly summaries on paper to M&E officer. The monthly summaries are then
converted into electronic format by the M&E based at the LGA PHC Department.
Who also oversee the input of all data into the DHIS. In addition, LGA PMTCT
coordinators work regularly with health information officers to ensure that all
health-care workers receive training on data reporting requirements, data
collection tools and any changes or updates to the definitions of the data elements
used as indicators of the performance of PMTCT services.

MAKING
A data quality improvement intervention that involved specific
training for health-care workers on the importance of public health
information, monthly data reviews and feedback, and regular data
audits is effective in significantly increasing the completeness and
accuracy of the data used to monitor PMTCT services.

Improving Data Collection across the Health Care
System
Addressing health and health care disparities requires the full involvement of organizations
that have an existing infrastructure for quality measurement and improvement. Although
hospitals, community health centers (CHCs), physician practices, health plans, and local,
state, and federal agencies can all play key roles by incorporating race, ethnicity, and
language data into existing data collection and quality reporting efforts, each faces
opportunities and challenges in attempting to achieve this objective.
To identify the next steps toward improving data collection, it is helpful to understand these
opportunities and challenges in the context of current practices. In some instances, the
opportunities and challenges are unique to each type of organization; in others, they are
common to all organizations and include:
 How to ask patients and enrollees questions about race, ethnicity, and language and
communication needs.
 How to train staff to elicit this information in a respectful and efficient manner.
 How to address the discomfort of registration/admission staff (hospitals and clinics) or call
center staff (health plans) about requesting this information.
 How to address potential patient or enrollee pushback respectfully.
 How to address system-level issues, such as changes in patient registration screens and
data flow.

THE MOST EFFICIENT HEALTH DATA COLLECTION METHODS
The healthcare industry has received a variety of different tools to generate
necessary data. They make it easy to handle the following tasks:
Evaluate the project;
Attach interview protocols;
Include surveys and examinations;
Manage focus groups and more.
The idea is to choose a set of tools that refer to specific activities performed by an
organization. Those activities will help to define what data collection methods are the
best options. Once there is a need to obtain primary data, you will need to choose
methods that refer to your particular situation.
The first thing you’ll need to do is to build an outline or plan giving you a clear
understanding of what methods are best to implement that should contain answers to
the following questions:
What data do you need to collect?
What tools do you need?
Are there existing tools for your purposes?
Are there any tool samples or templates available?
Who is responsible for collecting the information?

It’s important to have the right data collection tools in healthcare, that work well with
Enterprise data warehouses. This is critical to ensure as compatibility is vital, especially
when dealing with data houses that go back decades. This is also important to fully explore
as there are cases where the data has been proven to be faulty, and there are
incompatibilities in results when there is terrible integration.
Data collection tools also need to ensure that there is interoperability across the system.
There shouldn’t be situations where more data is shared when less is required. There are
also cases where metadata gets shared across an encrypted platform, and that violates
compliance policies. That’s why the data collection tools used should be scalable and
reliable enough to ensure proper compliance and security.
In the Healthcare domain, there are situations where errors may arise in the data collection
phase. This emerges as a result of faulty collaboration or security measures that haven’t
been put in place correctly. That’s why the data collection model and tool must be designed
to capture information more efficiently.
The health information system provides the underpinnings for decision-making and has
four key functions: data generation, compilation, analysis and synthesis, and
communication and use. The health information system collects data from the health sector
and other relevant sectors, analyses the data and ensures their overall quality, relevance
and timeliness, and converts data into information for health-related decision-making.

The health information system is sometimes equated with monitoring and evaluation but this
is too reductionist a perspective. In addition to being essential for monitoring and evaluation,
the information system also serves broader ends, providing an alert and early warning
capability, supporting patient and health facility management, enabling planning, supporting
and stimulating research, permitting health situation and trends analysis, supporting global
reporting, and underpinning communication of health challenges to diverse users.
Information is of little vale if it is not available in formats that meet the needs of multiple
users − policy-makers, planners, managers, health care providers, communities, individuals.
Therefore, dissemination and communication are essential attributes of the health
information system.

Data Collection Tools
Rural HIV/AIDS programs may need to collect different types of data. These could
include:
 Health outcomes data about HIV diagnoses, prevalence, incidence, viral load and
transmission rate; medication adherence; and disease progression, which could
be obtained from clinics, emergency rooms, and corrections facilities
 Social services data to understand how people living with HIV/AIDS are accessing
and utilizing support services
 Clinical data to measure whether patients are remaining in care and attending
scheduled appointments, plus linkages to other services
 Law enforcement data, which may include information about high-risk behaviors
like injection drug use or transactional sex
 Program data about HIV/AIDS prevention activities
The evaluation may be able to utilize existing data from these sources. Collaborations
between organizations, providers, healthcare systems, and law enforcement can help
programs obtain data they might not otherwise be able to access.

Data Collection Tools
Some of the data tools use in PMTCT program includes the
following:-
 Health Facility Patient’s Register
 Survey tools for coverage monitoring
 Lab Register
 ANC Register
 Delivery and Birth Register
 PMTCT Follow up Register
 PMTCT Monthly Report Form

PMTCT Register Directions:
• This book includes the date, facility #, client name, age, address, estimated date of
delivery, tribe, religion, HIV testing and results, and other information concerning the
client. This information is placed in columns.
• Date of collection or counseling: This is the date that the specimen was collected for HIV
testing during pregnancy. If women refuse the HIV test, enter the date of counseling. If the
patient was known to be HIV-positive and was not retested, it is the date when first seen for
prenatal care during this pregnancy. For women who are HIV-positive, this date must be the
same as the date of collection on the HIV-positive mother/infant database.
• Facility where tested: Write the name of the facility where the mother was counseled (or the
two-digit facility code). For HIV-positive mothers, make sure this facility code is the same as
the facility code in the HIV-positive mother and infant database.
• Maternal ID: This number is the prenatal number for each patient, or if the patient was tested
as an inpatient, it can be the inpatient number (up to 6 digits). For women who are HIV positive,
this number must be the same number as the maternal ID on the HIV-positive
mother/infant database so the two files can be linked easily.
• Age: Record the mother’s age when she is first seen for prenatal care.
• Estimated date of delivery (EDD): The attending midwife or counselor records the estimated
date of delivery on the prenatal card by using the reported date of the last menstrual period to
estimate the delivery date.
• Maternal address: List the address of the larger community first, then list the quarter or
district. Only larger communities need to be entered into the computer. Record more specific
directions to the house on the hardcopy in case a home visit is needed. List the address where
the mother resides at the time of the first prenatal visit.

• Previous HIV testing: Now that HIV testing is done more often, it is important to determine
whether patients have been tested previously. If patients do not know whether they have been
tested, record “No,” unless you can verify in a medical record that an HIV test was done. Ask
all patients who have had an HIV test when it was done, and what the result was (see below). If
the patient never had an HIV test, skip the next three questions.
• If yes, date of last HIV test: If possible, record the precise date from the medical record. If
this is not possible, estimate the date (year) from the patient’s history.
• Last HIV test ID number: For all patients who have had a previous test, determine whether the
test was done as part of a PMTCT program. If it was, record the maternal ID number that was
used during that previous visit. This allows the patient’s current record to be linked with her
previous record.
• Previous HIV result: 1 = Pos, 2 = Neg, 3 = Unknown
• We are especially interested in women who had a negative test result during a previous
pregnancy and now have a positive test result. We will assess what factors are associated
with acquiring HIV infection in these women.
• Women who have a documented positive test in the past do not need a repeat HIV test
unless there is a question about the accuracy of the previous test. Verify previous test
results in patient’s medical records as often as possible.
• If positive, did you ever take nevirapine: 1 = Yes, 2 = No, 3 = Unknown
• HIV-positive women who took nevirapine in a previous pregnancy may have developed
resistance to nevirapine. If possible, obtain consent to draw a blood specimen for the HIV
Variant Study from HIV-positive patients who previously took nevirapine, and note on the
record the date when nevirapine was given with the previous pregnancy.
•

Marital status: 1 = Married, 2 = Single, 3 = Widowed/Separated/Divorced
• Record the woman’s marital status as noted above. Categories 2 and 3 have been found to
be at increased risk of HIV.
Religion: 1 = Baptist, 2 = Presbyterian, 3 = Lutheran, 4 = Pentecostal, 5 = Catholic, 6 = Muslim,
7 = Pagan, 8 = Other
• Information on the patient’s religion will be helpful for counseling.
• Tribe: Write the name of the woman’s tribe in her register. Some tribes may have higher rates
of HIV infection than others. It is important to identify factors associated with different
infection rates among tribal groups so that AIDS education can be targeted to each group.
• Pretest counseling/consent to testing: 1 = Yes, 2 = No, 3 = Testing not done as patient had a
previous positive test
• Obtain verbal informed consent for HIV testing on prenatal patients. If patients agree to
HIV testing, code # 1. If they refuse, code #2. If patients have a confirmed HIV-positive
test, it is not necessary to repeat the test, and code #3 should be used.
• If no, reason for refusal: If patients refuse testing, ask them why they refused and record their
response.
• Post-test counseling done: Yes or No
• Whenever possible, provide post-test counseling on the day testing is done. Record “Yes” if
post-test counseling is done on the same day or prior to delivery. If previously HIV-positive
patients are not tested again but are counseled, record “Yes.” If patients are not
counseled about their test result prior to delivery, record “No.”
•

When tested: 1 = First antenatal visit, 2 = Follow-up antenatal visit, 3 = Antepartum during
illness (in hospital or as outpatient), 4 = Antepartum in labor, 5 = Postpartum
• It is very helpful for programmatic evaluation to know when patients were tested. Record
the best choice of the five listed. Do not confuse this column with the date when the test is
done.
• DETERMINE test result: 1 = Positive, 2 = Negative, 3 = Not Done
• In our pilot test, DETERMINE had a sensitivity of 98.5 percent and specificity of 97.5
percent. It is easy to use, readily available in Cameroon, and inexpensive. For that reason,
it is our primary rapid HIV antibody test. Women who have a negative DETERMINE test are
advised about the window period and encouraged to return for follow-up testing, but a
second or confirmatory test is not performed during the current visit.
• Second test: Record the name of the second test that is done.
• The laboratory performs a second rapid antibody test on all women who have a positive
DETERMINE test. If a second test is not done, leave this blank or record “Not done.”
• Second test result: 1 = Positive, 2 = Negative
• If a second test is done, record the result. If not done, leave this blank.
• Tiebreaker test: Record the name of the tiebreaker test that is done.
• If the results of the DETERMINE test and the second test are discrepant (i.e., DETERMINE
test is positive and second test is negative), perform a third (tiebreaker) test. Counsel the
patient on the result of this test. If a third test is not available, test the patient again later
during pregnancy, but before delivery. If a tiebreaker test is not done, record “Not done”
or leave this blank.
•

Tiebreaker test result: 1 = Positive, 2 = Negative
• Record the result of the third (tiebreaker) test, and
counsel the patient according to the
result of that test.
• The register will be checked and updated.
• Because it contains people’s personal information,
remember to keep the register out of
reach in a locked drawer or cabinet. Keep it clean
and record information accurately.
Carefully check the register for accuracy and update
it every time a woman is counseled
and tested.

INSTRUCTIONS FOR FILLING OUT PMTCT MONTHLY REPORT FORM
HOW TO FILL OUT STATISTICS FORM:
1. Date: Each facility records the date of the ANC or delivery of HIV-positive clients when they are
counseled. The date of a follow-up visit with a spouse can also be noted.
2. Location: Name of the site (The names of our sites are coded for brevity and data processing
purposes.)
3. # Pre-Test Counseled: The number of women who are pre-counseled as a group and on a one-
toone
basis.
4. # Refused: Those who refuse to consent to VCT for any reason during individual counseling. This
helps us to measure the rate of acceptance. If patients who initially refuse later consent to testing
at a clinic, this should be noted in the “Comments” section, and the previously submitted reports
should be amended appropriately by changing the refusal to an acceptance.
5. # Tested for HIV: Women who consent to and have the HIV test after counseling
6. # Post-Test Counseled: Women who are counseled after test results have been received (This
information identifies patients who go home without post-test counseling for follow up.)
7. # HIV-Positive: Women who test HIV-positive (This information helps us to measure sero-positivity
among pregnant women.
8. # HIV-Positive Counseled on PMTCT: Positive women who are counseled on PMTCT and whether
to
receive ARV prophylaxis for themselves and their babies
9. # Mothers Receiving ARV Prophylaxis: HIV-positive clients who are given antenatal ARV
prophylaxis

10. # Babies Receiving ARV Prophylaxis: Babies of HIV-positive women treated with ARV
prophylaxis
11. # Babies Followed Up: Babies of HIV-positive women visited during the month, those brought
in for
PCR at six weeks of age, or those receiving an HIV antibody test at 15 months
12. # Babies HIV-Positive at 15 months: Infants of HIV-positive clients whose PCR results are
positive or
who have a positive HIV-antibody test at 15 months of age (This enables us to assess the
program’s
effectiveness in reducing the rate of MTCT.)
13. # Spouses Screened: Spouses screened in the program (The rate of spouse participation
indicates
their cooperation in preventing MTCT.)
14. # Deliveries: Total number of deliveries during the month at each facility
15. Comments: Any useful observation worth noting
Note: Numbers 9–15 are not necessarily linked to numbers 1–8. For example, a mother treated
this
month probably registered for ANC many months ago.

ILLUSTRATIVE INDICATORS LIST FOR MONITORING PMTCT PROGRAMS
1. # health facilities providing the minimum package of PMTCT services, which includes counseling
and testing, ARV prophylaxis, infant feeding counseling, and family planning counseling or
referral
2. # healthcare workers trained in provision of PMTCT services (minimum training includes PMTCT
related
counseling and testing, ARV prophylaxis, infant feeding counseling, and family planning
counseling or referral) (Presidential Initiative Core Indicator)
3. # women making at least one ANC visit at a PMTCT site in the past quarter
4. Number and percent of pregnant women making at least one ANC visit at a PMTCT site who
accept HIV testing (PMTCT Cascade)
5. Number and percent of women making at least one ANC visit at a PMTCT site who receive HIV
test results and post-test counseling (stratified by serostatus)
6. # HIV-positive pregnant women
7. Number and percent of pregnant women testing HIV-positive who receive a complete course of
ARVs to prevent MTCT in accordance with nationally approved guidelines (UNGASS Indicator)
8. # infants born to HIV-positive mothers who receive recommended dose of ARVs for PMTCT
9. # HIV-infected infants born to HIV-infected mothers who received ARV prophylaxis (UNGASS
Indicator)

10. # people reached with BCC/IEC
11. # IEC events conducted
12. # IEC campaigns
13. # IEC materials developed
14. # IEC materials/products disseminated
15. # formative studies/assessments conducted
16. # training sessions conducted (by focus of training)
17. # people trained
18. # workshops conducted
19. # workshop participants (by focus of workshop)
20. # condoms distributed in ANC
21. # infants tested at 15 or 18 months
22. Availability of condoms: % of time condoms are available in clinic
23. Availability of HIV test: % of time in period considered with no shortages of HIV test kits
24. Availability of ARV drugs in MCH clinic: % of time in the period considered with no shortages of
ARV drugs in the MCH clinic
25. # HIV-negative women provided with education and risk-reduction counseling about the
increased risk of MTCT
26. Episotomy rate: % of HIV-infected women having delivered, over the considered period, who
had an episotomy
27. # mothers referred for family planning, prevention, and care by midwives or outreach workers

28. # women provided with ongoing counseling
29. # fathers or partners who came in for VCT
30. # fathers or partners tested for HIV
31. # staff involved in each unit
32. # ANC clients per clinic per day
33. # midwives trained in PMTCT
34. # midwives with supplies to administer ARVs
35. # mothers provided with ARVs by midwives
36. # mothers referred for family planning, prevention counseling, and
care by midwives
37. # infants referred for care by midwives

NASIRU I. BARDA DATA COLLECTION TOOLS FOR EMTCT.ppt

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