TT Tracker - Sightsavers - 2020 Field survey Report Global South eHealth Observatory
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2020 Field survey Report
Global South eHealth Observatory
TT Tracker- Sightsavers
Figure 1: Zakari Abdou Loufaye, civil servant, using TT Tracker at the Biro health centre, Nikki region, Benin
Produced remotely by Adélaïde Soulard, support officer of the Pierre
Fabre Foundation
April 2020
Foreword
Within the framework of the call for applications from l’Observatoire de la e-santé in the Southern
countries 2020, the "TT Tracker" initiative, implemented by the British organisation Sightsavers, has
been identified as one of the most promising projects submitted this year.
While under normal circumstances, the Pierre Fabre Foundation would have set up a field visit to get a
better understanding of the above-mentioned initiative, due to the current travel restrictions in place
because of the Covid-19 pandemic, a field visit is not possible. However, telephone and video conference
meetings were organised to meet the shareholders and beneficiaries of this initiative.
This document is complementary to the two questionnaires and documentation already made available
by Sightsavers. Additional information was extracted from the Sightsavers (www.sighsavers.org) and
TT Tracker websites (www.tttracker.org) as well as interviews.
Trachoma and Trachomatous trichiasis (TT)
Trachoma is an eye disease and the world's leading infectious cause of blindness. This disease is caused
by a bacterium called Chlamydia trachomatis. The infection is transmitted between people on the one
hand by direct transfer of eye and/or nasal secretions of infected persons; and on the other hand by
indirect transfer via transport by certain species of flies. It is mainly preschool children who become
infected by this disease. If repeatedly infected by this disease over many years, the eyelashes may curl
inward to rub the surface of the eye, making it very painful to blink, causing discomfort and
permanently damaging the cornea which can lead to blindness. This is condition is called trachomatous
trichiasis (TT).
Trachoma, a neglected tropical disease, is endemic in some of the poorest and most rural areas of the
world. Africa is the most affected continent, but the disease is also present in Central and South
America, Asia, Australia and the Middle East. In 1997, the World Health Organisation established the
Alliance for Global Elimination of Trachoma by the year 2020 (GET20) bringing together all parties
wishing to become involved in the fight against trachoma and it adopted resolution WHA51.11 in 1998,
aiming at eliminating trachoma as a public health problem on a global scale. The elimination strategy
is summarised by the acronym “SAFE”: Surgery to treat the advanced stages of the disease; Antibiotics
to treat C. trachomatis infection; Facial cleansing; and Environmental change to reduce transmission.
As of 2 January 2020, 13 countries reported to have met the elimination targets. In 2018 alone, 146,112
people were operated on for advanced TT and 89.1 million were treated with antibiotics. However, as
the target of elimination by 2020 was not met, The Accelerate Programme was established in 2018 to
boost control efforts. Through that programme Sightsavers participates with government ministries
and other partners in the implementation of trachoma elimination plans through technical, logistical
and financial support.
The origin of Sightsavers
Sightsavers is a British Non-Governmental Organisation. It was founded by Sir John Wilson in 1950
under the original name of the British Empire Society for the Blind. John Wilson lost his sight at the age
of 12 during an experiment at school. He then became a public health advocate. He was best known
for his work against blindness in developing countries in Africa and South and South-East Asia.
In the first year of the British Empire Society for the Blind, the society established national organisations
for the blind in six countries, focusing on education, rehabilitation and well-being. In 1957, the
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organisation changed its name to the Commonwealth Society for the Blind and received The Queen's
Royal Statute one year later, becoming the Royal Commonwealth Society for the Blind (RCSB). It was in
1987, following the "SightSavers" appeal on the children's television programme Blue Peter, which
raised over £2 million for eye care in Africa, that the RCSB adopted the title Sightsavers.
Sightsavers' vision is "a world where preventable blindness is eliminated and where people with
disabilities have the same rights as others.” They work in more than 30 countries around the world
(particularly in Africa and Asia) with local, regional, national and international partners and
governments. Their activities concern: the protection of sight; the fight against neglected tropical
diseases (NTDs); and the fight for the rights of the disabled. They do this by providing treatment to
prevent disease, performing eye surgery, advocating for the rights of persons with disabilities and
improving health services.
Sightsavers is led by Dr. Caroline Harper, its Chief Executive Officer since 2005, with boards of directors
in nine countries and a global management team of 15 people from across the organisation, including
regional directors and senior executives. Currently, approximately 500 employees work for Sightsavers
worldwide. In 2018, total income rose to £312.8 million from donations (cash and/or in-kind e.g.
antibiotics), grants, project funding, etc.
Origin of the TT Tracker project
Origin and objectives
The international community, surgeons, supervisors, ministries of health, partners, donors, and the
World Health Organisation (WHO) share responsibility for ensuring quality patient services while
working to eliminate trachoma. In response to this need, WHO recommended the development of a
communal application that could be used in all national programs. The TT Tracker does this while
addressing the challenges of providing trachoma surgery services, ensuring that patients requiring
follow-up care are known to the programme and that surgeons' performance is tracked so that any
need for additional training is recognised. All this data allows programmes to evaluate the success of
past outreach efforts and to plan future actions.
The TT Tracker is the result of a recommendation from programme partners including the World Health
Organisation, Sightsavers, The Carter Centre, USAID, RTI, Fred Hollows Foundation, Helen Keller
International, Emory University and Johns Hopkins University. Sightsavers led its development with
input from experts from several organisations, and Sightsavers continues to manage the application.
Initial funding was provided by the Queen Elizabeth Diamond Jubilee Trust and the Department for
International Development.
Programmes may slightly modify the country survey, but this must be agreed with the country
programme at the beginning of implementation and in collaboration with coordinating partners and
the TT Tracker development team. The TT Tracker should generally be a tool used universally in
national programmes so that costs can be kept low and so that changes to country-specific projects
will be limited.
The team
The TT Tracker has been developed by the digital team from the Sightsavers NTD centre. They have
several projects and this one takes about 30% of their time for each project. This team consists of a
small number of people and is funded on a project-by-project basis following fundraising. We were
able to meet Sarah Bartlett, the Director of the Digital Health centre, based in France, and Babacar
3
Ngom, the Data and Systems Manager and lead TT Tracker trainer, based in Senegal. This team works
with the support of numerous international partners and is locally surrounded by appointed people in
each of the countries of implementation at central (ministries) and regional levels.
How the TT Tracker project works
People involved and partnerships
Many people are involved and many partnerships are being developed in relation to national TT
elimination programmes. Indeed, Sightsavers implements its TT Tracker tool directly in relation to
national plans, so they are directly linked to governments and ministries. Likewise, as mentioned
above, this tool is the result of international communication involving many partners, including the
WHO. Sightsavers also works with locally implemented organisations to facilitate its integration into
districts and communities. These partnerships are very important for the successful implementation
of TT Tracker.
The TT Tracker development team makes the TT Tracker available for a country in partnership and in
line with the national programme. Thus, users are created, their roles assigned and their access
determined. The development team is thus supported by an appointed administrator within the
ministry or a coordinating partner, as is the case for example with Gracia Elvire, NTD Data Manager at
the Ministry of Health in Benin, who told us about her role in the implementation of the TT Tracker in
her country. This administrator is responsible for simple data management and system updates, such
as maintaining lists of surgeons, project areas and programme supervisors.
“I look at the data when there are surgical camps set up. It is me who enters the data. I handle the
planning meetings and data analysis. ”
On the field, the proper use of the TT Tracker tool is monitored by supervisors such as Naomi Jatau,
field supervisor in Nigeria. Any unprocessed data errors in the field must be reported by the field
supervisor and adjusted by the appointed administrator. The administrator will review the submitted
data and contact the implementing partners if any data are identified due to inconsistencies.
The direct field users of the TT Tracker mobile version are the surgeons themselves or, more often
than not, their assistants. They are the ones who record patient data: registration, assessment, follow-
up care. This data is then accessible via the Web Metabase version where supervisors, administrators
and the development team have access to all data concerning them. Partners may also have more or
less restricted access.
“There's the administrator who has access to the data. Then the supervisor who works with the
surgeons. It's an interactive display. Training is conducted with the surgeons and the data collectors.
There are also calls with the development team for follow-up care. ”
Beneficiaries
All people in the chain of the fight to eliminate TT are beneficiaries of this TT Trackers tool:
- Patients because by using this tool, all their data is kept, thus allowing for better management.
In addition, TT Tracker allows patients to be followed as closely as possible. Indeed, they
require several follow-up appointments after their operation: after 24 hours, between the 7th
and 14th day, between 3 and 6 months. Thus, the use of TT Tracker allows the surgeon to check
which patient needs to be seen and when. Then they can contact the patient if they do not
come off their own accord to remind them of the need to be monitored.
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- Surgeons because TT Tracker allows them to store all patient data in one place, so it can be
easily retrieved. The tool facilitates patient management by, for example, issuing files every
weekend listing the patients that require a follow-up appointment the following week.
- Administrators and supervisors because the tool allows them to access national and district
data in real time. Indeed, the data are regularly synchronised using an internet connection.
Therefore, the administrator and more broadly the ministry or other partners can monitor the
evolution of the situation on the elimination of TT. They can also check the follow-up care of
patients and analyse of the performance of surgeons.
- The development team that can monitor the correct use of the tool remotely, correct errors
and provide support also in real time.
In Practice
Background
TT Tracker was developed using the CommCare platform, a mobile data collection software that has
already been successfully used by community health workers in more than 50 countries around the
world and is designed for settings with low-resources. With CommCare, programmes are able to track
patients longitudinally through surgery and follow-up care by entering data into GPS-enabled Android
phones or tablets.
Details on the mobile version
Surgeons or their assistants use the mobile version to register their patient records. It was built by
following existing paper forms and meeting international recommendations. Thus, on the one hand,
the data collected corresponds to the standard, and on the other hand, the recorders already have
knowledge of the data to be entered. Data collection can be done offline, and it will then be
synchronised when there is a connection.
Access to the database is protected by a unique and confidential
username and passport for each recorder. There are three options
on the home page:
- Start: link to access all forms and thus collect the data;
- Synchronise: in order to send and receive all new information
since the last synchronisation;
- Log out: to close the recorder session and thus secure patient
records.
The data on the application is currently available in French and
English. Other language extensions are under development.
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Various forms are accessible once the session has started. From
there, we can:
- Register the patient: Every patient who comes to a
centre or camp for an examination will be registered
there;
- Manage patient data: once the patient is registered,
their data (including assessment, surgery, the 3 follow-
up steps) will be documented and updated via this link;
- List the upcoming follow-up appointments: in order to
quickly have the list of patients to be monitored and
the time slots for each;
- Management of sessions, a session being a health
location, which can be fixed or mobile, by giving details
on dates and geolocation. The creation of the session
is the first step to be completed, patients are then
registered per session.
Patient data are collected at 5 key moments summarised in the diagram below:
When registering a patient, the session and personal data such as: name, age, gender, place of
residence, person with a mobile phone (important for follow-up care) and valid phone number, name
of the recorder and comments if necessary are filled in. Once a patient is registered, he or she is
assigned a unique identifier, which is then used for identification.
Once registration is complete, the recorder can begin patient assessment by going to Patient
Management. The registered patient can be retrieved using the search button and by entering his or
her name or ID. When the patient's record is selected, the recorder can access summary information
concerning: general data, assessment, the surgical procedure, and the different follow-ups.
From there, the patient's assessment can begin. Numerous questions on the forms are filled in to
describe the patient's situation. A few examples are given below:
6
Each question is asked individually for each eye, if an infection is suspected, the following questions
will be asked and vice versa. Following the evaluation, a recommended action will be selected for each
eye:
Questions related to surgery and follow-ups can be asked, depending on
the action selected here:
- Surgical procedure (accepted): consent and date of operation;
- Surgical procedure (refused): the reasons for the refusal, in this
situation, patient follow-up continues with awareness;
NB: the tool has been designed to guide the recorder as well as possible
and to avoid input errors as much as possible, for example here a
blockage prevents the double input of accepted and rejected surgical
procedures.
- Eyelash removal: patient trained in eyelash removal; tweezers
provided or not;
- Reorientation (referred): the reasons and place of reorientation;
- No management: the reasons why there is no management need to
be filled in.
If the patient has accepted the surgery, the next step is to fill out the surgical form. This one includes
the following information: the name of the surgeon (very important data for performance monitoring),
validation questions are then asked in order to confirm the input, the type of surgery, if there were
complications, the equipment used, the post-surgical treatments issued.
Once the surgery is completed, critical data is used to follow up on the patients operated on. It is
necessary that the patient is monitored 3 times after surgery: 24 hours after, between the 7th and
14th day, and between 3 and 6 months. It is hardest to reach patients for their last follow-up since by
then patients have often lost sight of their follow-up care.
Follow-up questions depend on what was recommended and the surgery that was done, so the first
step is to recall what was done. Some examples of the 24-hour follow-up can be found below:
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These same questions as well as other more specific ones such as:
If, at the end of the follow-up
visit, a surgical procedure
needs to be redone and will
be performed on site, a new
patient record registration
and a new surgical
procedure form are
required. This will ensure
that the patient is properly
monitored and documented
once the new surgical
procedure is performed.
The development team makes itself available to ensure the TT Tracker is correctly used. They organise
training sessions led by the trainers for ministry officials and partners, training for administrators, and
implementation training for surgeons and their assistants. This initial training lasts about ten days. For
example, the training sessions for recorders includes a theory section with a presentation of all the
tool's functionalities, but also a practical part with scenarios and live application. In Nigeria, for
example, the digital tool has been very well received on the one hand because the users are educated
to at least at a university level, so they are used to it, especially as the application is simple and
intuitive; and on the other hand because users are used to using smartphones for data collection in
other areas.
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Figure 2: Training surgeons to use TT Tracker in Kano, Nigeria
Figure 3: Training on how to use of TT Tracker in Benin
For example, below is a review from Zakari Abdou Loufaye, a civil servant:
This was the third time Zakari used the TT Tracker to enter data - a new system. He said the application
is very easy to use.
“It helps the surgeons and, beyond surgeons, it helps the whole system. When you work with many
patients and you don't have their data in one application, it’s not easy to remember exactly where the
different pieces of information are when a surgeon has to make a decision about what happened and
if further investigation should be followed. ”
"Once the data is sent, it will be everywhere, the data is entered into the health system. Before the
application, the surgeon would record the information on a paper form. ”
“Even health is very important. It's about sight, it's important for the life of a human being. ”
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Figure 4: Zakari Abdou Loufaye, civil servant, using TT Tracker at the Biro health centre, Nikki region, Benin
Details on the Web version for data visualisation
The development team, administrators, supervisors, ministries and partners have access to the data
collected via the web interface: Metabase. It is a data display tool that can be used by programmes to
facilitate data analysis and graph development. The tool accesses only the anonymised summary data
exported from the TT Tracker system to provide programme holders with daily updated snapshots and
reports on activities. Reports are customisable; a set of reports will be created by the TT Tracker
development team and saved in the country project for easy use.
For example, in Benin, the dashboard has three components:
- Surgical results with illustrations representing the number of surgeries according to patient
characteristics or the possibility of calculating different statistics according to the
region/district;
- Post-operative assessments: as before, several statistics can be highlighted, for example the
follow-up rate;
- Data quality that identifies inconsistencies, allowing the supervisor to contact the recorder to
correct input errors.
Below is an example of summary dashboards:
10Metabase is protected by a username and password so that no unauthorised users have access to
aggregated information. Ministries will have access to complete national data with the possibility of
reviewing the data from smaller regions or districts. All other partners will have access to the
appropriate level of data - no supporting partner will have access to other partners' data.
Other tools
Metabase and CommCare generate various types of reports. For example, there is a summary activity
report, which is usually sent by email every month, (this may vary). This report provides an overview
of the activities and results that have taken place. The data is also available live via the dashboard
where you can see for example:
- People who are diagnosed with TT (with the possibility of gender separation)
- Actions set up for TT patients (surgical operations, refusals, epilation (eyelash removal),
referrals)
- Patients/eyes operated on (with the possibility of gender separation male/female)
- Surgical results (at each of the three key moments: 24 hours, between the 7th and the 14th
day, between the 3rd and the 6th month)
- Rates of completed follow-ups
- Productivity of activities (# days of surgery, # surgeons, # eyes operated on)
- Session Summaries
Surgical results and performance evaluations are also available via email or in CommCare. This
concerns the results of surgical operations in total and by surgeon as well as follow-up data. This report
is intended for the administrator and allows them to determine the number of surgeries performed,
the number of follow-ups, the number of complications, etc. The latter data allows the identification
of surgeons who need further training, because if the number of complications is high, it may imply
that the surgeon needs to be retrained for the surgical procedure.
11Figure 5: Example of TT surgery performed by surgeon Dr. Lukanga in Tanzania
Another report for surgeons
describes national and
individual data. These reports
on surgeons, by sharing their
contributions, are intended to
encourage surgeons to
support the efforts provided by
these programmes for the
global elimination of TT. This
report is sent monthly by e-
mail to each surgeon who has
performed at least one
surgery.
Finally one last very important
report sent automatically every weekend by email is the list of patients waiting for a follow-up
appointment at plus one to two weeks or at plus 3 to 6 months. This allows the surgeon to anticipate
the patients that they need to consult the following week and to follow up on patients who do not
come.
So what are the impacts and benefits on health?
The first national problem was the lack of data. Indeed, data were at best collected on paper files
which remained at a local level, with only certain information aggregated and reported, oftentimes
months after the activities took place. Thus, the ministries were not fully aware of the situation
regarding TT activities in their country. TT Tracker allows administrators and national authorities to
have real-time data on the health of its population with regard to TT.
“All the data is on the same platform, by commune, by camp. Everything is archived in the same
place, this allows information to be retrieved quickly, it is an aid to data analysis and immediate
management of surgical data. ”
12Thus, TT Tracker can be used to guide strategies for action, for example by deciding to set up surgical
camps in locations where TT prevalence has been identified as high but where no camps have been
scheduled yet. For example, in Benin where TT is not widespread, camps are only set up in villages
where many cases have been reported.
The main challenge identified leading to the implementation of TT Tracker is the follow-up care of TT
patients undergoing surgery, especially the last follow-up at 3 to 6 months, which is essential to
determine whether or not the patient has recovered. This is because patients may go to different
places to receive surgery, such as temporary camps, so it can be very complicated to find them for
follow-up appointments. For example, in Nigeria, data showed an improvement in patient follow-up
care at 3 to 6 months with a better coverage rate.
“Patients often don't attend follow-up appointments for financial reasons and sometimes the patient
doesn't have a phone. When we don't have a phone number, we go through the community leader to
look for cases. It's efficient but it requires a lot of resources. There is a need to motivate community
workers, which creates additional costs and budget problems. ”
A final direct objective is to try to understand the performance of surgeons. The reports generated by
the tools make it possible to evaluate the performance of the surgeons according to the number of
complications encountered by each one.
“There's a real impact on surgeons and on follow-up care, TT Tracker provides coverage. Plus, for
post-op follow-up care, we don't have to go snooping through the paperwork. ”
Finance and economic model
Many people are involved and many partnerships are being developed in connection with national
trachoma elimination programmes. For example, TT Tracker can be implemented as part of a national
trachoma elimination programme for which financial, human and material resources are already
available; in this case, Sightsavers is in direct partnership with governments, as is the case in Benin,
Guinea or Nigeria, for example. In addition, outside of Sightsavers funded projects, Sightsavers offers
fee-based packages to other organisations that include system, support, training and data
management. Other costs related to the use of TT Tracker (purchase of telephone and airtime, training
and staffing needs) are to be covered by the implementation programmes. For this purpose,
Sightsavers can also work with local organisations.
Sightsavers manages all software development and platform management necessary for application
maintenance. These funds come from the fundraising efforts of the NTDs team as well as the
Accelerate programme.
Perspectives
Sightsavers is already thinking about several developments.
Concerning TT Tracker, trials for the automatic sending of SMS messages are underway to remind
patients of their follow-up appointments. This new system generates additional costs that were not
taken into account and are borne by the beneficiary country. This development is under consideration.
The Metabase and CommCare platforms are in constant development with improvements being made
to the dashboard and creation of new reports. The aim is to create a universal platform adapted to the
needs of countries and partners. Another development is the translation of these tools into additional
languages (e.g. Spanish).
13Sightsavers intends to expand nationally in the countries in which they are implementing; they also
wish to implement TT Tracker where there are funds from national TT elimination programmes but
also where there are none.
Finally, with the ultimate goal of eliminating TT within a few years, Sightsavers is developing new uses
for this tool, notably the monitoring of the paediatric cataract, a condition that cannot be eliminated
and that can appear at any time.
"TT Tracker has massive potential. It can be used for paediatric cataracts, even for adult cataracts or
any other neglected tropical disease that requires surgery and post-operative follow-up care. ”
Recommendations and conclusions
Sightsavers is committed to the complete elimination of TT. They begin by developing the strategy with
the partner country by identifying the problems to be solved, the challenges, the national health
system, and then by drawing up the list of surgeons and mapping the distribution of TT cases in the
country. They surround themselves with a local team involving all the necessary partners. The TT
Tracker tool is adapted to international management recommendations and facilitates post-operative
follow-up care of patients as well as monitoring of surgical performance. Even if the tool is not intended
to be a national database, it allows to track the TT with the final objective of eliminating it. Thanks to
the involvement of many international players, this tool was created and has proven its effectiveness.
It intends to develop geographically in order to achieve a global elimination of TT and also by adapting
to other conditions requiring the same follow-up care.
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