Improving data use in trachomatous trichiasis programmes: operationalisation of the TT Tracker

Abstract

Trachoma is a disease of the eye and the leading infectious cause of blindness worldwide. Years of repeated infections can cause in-turning of the lashes so that they rub against the eyeball, causing pain, discomfort and, if left untreated, blindness. This is known as trachomatous trichiasis (TT) and can be remedied by surgery. To improve oversight and reporting of TT outreach, Sightsavers developed a mobile phone application called the TT Tracker so that TT surgeons, assistants and supervisors can collect and analyse information about surgical outcomes and performance and determine when and where follow-up appointments are required. The TT Tracker is being used by seven national programmes. Examples of use and programme improvements from Nigeria, Benin and Senegal are discussed here.

Background

Trachoma is the leading infectious cause of blindness worldwide. Years of repeated episodes of active trachoma can cause eyelid scarring so severe that the eyelid itself turns inward. Lashes then rub against the eyeball, causing pain, discomfort and, eventually, clouding of the cornea. This can lead to blindness if left untreated and is known as trachomatous trichiasis (TT).

National trachoma elimination programmes offer surgery as the remedy. These surgeries often take place in remote locations and in resource-poor countries that lack robust data systems. The WHO held a meeting in 2015 with key stakeholders to discuss the need for the development of a system to track TT patients through the steps of surgical intervention, as one exhaustive, scalable system did not exist.¹ Sightsavers developed a mobile phone application, called the TT Tracker, in response. Using the TT Tracker, TT surgeons, assistants and supervisors collect and analyse information about surgical outcomes and performance and determine when and where follow-up appointments are required. System development was supported by the Accelerate trachoma elimination programme.² Details of the system design and purpose have been documented.³

Prerequisites to use the tool include funded plans for TT surgeries and follow-up services for at least 12 mo, funding support for the setting up, training and implementation of the TT Tracker, and the designation of a focal lead inside each country's national programme to guide implementation and routine data reviews. The TT Tracker has been used by national programmes in Benin, Guatemala, Guinea, Mozambique, Nigeria, Senegal and Uganda. In March 2023, >50 000 TT patients had been captured in the system.

Operationalisation and data use

Here, we focus on experiences from Benin, Nigeria and Senegal, all in different places on their trachoma-elimination journeys. The Benin programme used the TT Tracker for 15 consecutive months, and stopped in September 2021 when TT surgical outreach was no longer needed. The system is still in use in both Nigeria and Senegal and has been for 49 and 21 consecutive months, respectively. The TT Tracker is being used to improve the efficiency and efficacy of TT programmes in these countries in the following ways.

Data quality

Data completeness is the most obvious data quality benefit of the TT Tracker, with most fields on the mobile phone-based form required for completion before upload. The online Data Quality Assessment (DQA) dashboard also supports programmes with data quality. In Benin, the national programme focal person reviewed this dashboard consistently, finding errors and issues; for example, if a patient was recommended for surgery but no surgery was documented, or if a follow-up visit was carried out but the patient was not found in the system at the time, meaning that the records needed to be linked retrospectively. Each country’s programme uses the DQA dashboard to ensure that all surgeries are linked to an outreach event and a surgeon, which is essential for reporting and analysing outreach activity and surgical performance. When issues are found, the focal person requests clarifying information from supervisors and surgeons so that changes can be made, ensuring a clean dataset. The Nigeria programme also reviews TT Tracker data against what was documented at the ward level, to ensure records on surgeries are complete, both in the TT Tracker and at the surgery centres. Biweekly meetings with the TT Tracker development team at Sightsavers support these efforts.

Data timeliness

In interviews with state (regional) level users of the TT Tracker in Nigeria, undertaken in 2021, information was collected on the availability of data using the TT Tracker compared with without (Table 1). Reported reporting ranges were broad, both with and without the TT Tracker, but responses showcase the improved accessibility of TT data in the Nigeria trachoma programme when using the TT Tracker for reporting.

Table 1.

Availability of data with and without the TT Tracker in Nigeria

Report	Time needed after activity for report to be available—without TT Tracker	Time needed after activity for report to be available—with TT Tracker
Due for follow-up lists	10 h–13 wk	5 min–72 h
Surgeon performance	2 d–3 wk	1 min–48 h
Campaign activity	3–10 d	10 min–48 h
Activity reports by LGA	1–3 wk	6 h–5 d
Activity reports by state	5 d–2 wk	2 h–1 d
Donor report	3–4 wk	2 d–2 wk

LGA, Local Government Area; the unit of government in Nigeria below the state, or regional, level.

Alongside these improved standard report availability times, programmes can also see data in near-real time on online dashboards. In Senegal, for example, the trachoma lead checks the dashboard daily during outreach. In the past supervisors would have had to wait for the data to move up through the health facility then district reporting structures before taking action. The online dashboards give the programme an opportunity to remotely supervise activities and data collection.

Patient follow-up rate improvements

In the same set of interviews in Nigeria discussing data timeliness, all state representatives interviewed said that the TT Tracker has added value and increased follow-up rates; what is, however, not uniform is the percentage increase. Those interviewed said that post-op uptake increased from 10% to 75%. The automated due for follow-up lists made what was a ‘Herculean task’ now ‘surmountable’. All countries use the due for follow-up lists generated from the system to plan follow-up visits. To further increase the 3–6 mo follow-up rates, a pilot was performed in Bauchi state, sending automated SMS through the TT Tracker system when follow-up was due (Figure 1). Messages in each patient's chosen language were scheduled at specific delivery times. Of the 937 patients who had telephone numbers registered, 388 of them stated that they returned because of the SMS reminder. It is promising to the programme that 41% of patients returned because they received an SMS from the TT Tracker. Expansion of the use of SMS in the Nigeria programme and other countries is underway.

Figure 1.

Example SMS messages reminding TT patients of follow-up appointments.

Surgeon audits

In Senegal and Nigeria, the TT Tracker is now used to facilitate surgeon audits, easing the process substantially. A surgeon audit is a standardised tool for monitoring the quality of surgeries being delivered. It measures actual surgical outcome by individual surgeons, comparing that with a desired quality standard. For the purpose of performing the sampling for the audit, surgical audit teams obtain the patient lists with the associated operating surgeon from the TT Tracker. Once the sampling is complete the audit is then performed using the documented diagnoses, surgical procedures used and outcomes readily available in the system.

Systems improvements

Over the years, national, regional and district level workers, surgeons, assistants, surgical audit teams and implementing partners have helped to improve TT Tracker functionality. These user-requested enhancements suggest that the TT Tracker is valued by the various teams implementing it. Some examples of this are: adding an additional subdistrict level into the location hierarchy, automating specific national and donor TT reports, including a field for the names of data entry personnel and including a nickname field for patients who do not have a contact number to share so that they would be easier to identify for follow-up. Where previously the system only had surgery sessions (so surgeries were associated with specific outreach), follow-up sessions were also added to account for surgeries performed during planned follow-up visits.

Implementation challenges

With the many successes have, of course, come challenges. At the workforce level, many surgeons did not feel immediately comfortable with using a smartphone for data collection and use. This required additional training resources, and in many cases a reliance on the surgeon assistants to help upload and access data. We also met a general reluctance to leave behind paper reports; acceptance came over time when users saw the benefits of the system and began trusting it. Even with this acceptance to move to digital, ensuring national programme ownership of the TT Tracker at all levels is a challenge. Incorporating the dashboards and the reports generated from the tool into trachoma review meetings (both local and national) have helped combat this.

Use beyond trachoma programmes

The data needs of TT programmes are not unlike those of other disease and eye health programmes, so Sightsavers has taken the system design, training materials and implementation plans and modified them for use elsewhere. The CataTrack system, for paediatric cataract, is being used in Nigeria.⁴ The lymphatic filariasis (LF) Tracker, for LF programmes, is being used in multiple countries, with further expansion underway. Where elimination is the goal, systems like the TT Tracker help countries reach the finish line with improved programme reporting and efficiency. Where elimination is not the goal, a system like CataTrack can be a stop-gap solution while national electronic medical record or community health information systems are put into place. In both cases, building a culture of data use and continual programme improvement remain the goal.

Authors’ contributions

SB, CN and BN conceived the paper. SB was the lead writer. NO, MB, GT, and AD contributed. All the authors read and approved the final version of the manuscript.

Funding

None.

Competing interests

None declared.

Ethical approval

Not required.

Data availability

None.