Opinion: Data we trust is a vital weapon as diseases gain ground

Climate change, conflict, human behavior, and the breakdown of public health initiatives have all been blamed for the re-emergence of infectious diseases such as cholera, tuberculosis, and polio. The fight to stop these diseases from causing new devastation won’t be simple and doesn’t stand a chance without robust data.

I’ve been part of one of the world’s largest public health initiatives for 10 years: an ambitious project to map the blinding neglected tropical disease trachoma globally. Our data has given strategic insight to nine countries which have gone on to eliminate trachoma as a public health problem — most recently Togo and Malawi in 2022, with Benin expected to follow in 2023.

We have supported fifty-five countries to carry out surveys, looking at more than 12.7 million pairs of eyes. I hope that what we’ve learned can help others facing new challenges from old diseases.

Trachoma is a bacterial infection that has plagued humans for thousands of years, turning eyelashes inward so that they scrape against the eye with every blink. We had to be ambitious. When we first began supporting Ethiopia to conduct trachoma surveys in 2007, 1,244 million people worldwide were suspected to be at risk. The scale of work sometimes felt insurmountable. Over time our successes, such as mapping more than 1,500 districts in less than three years, have brought more countries and partners on board.

Here are three recommendations I have for any project working at the intersection of data and disease elimination.

1. Don’t compromise on data standards

Delivering data that health ministries can trust demands rigorous standards. This has been fundamental to our work since day one. Our graders, or surveyors, go door-to-door, checking people’s eyes for signs of trachoma and logging data in real time.

Trainees may be highly qualified medical professionals, even ophthalmologists, but if they can’t reach a very high level of accuracy they won’t pass assessment. They receive identical training in every country. In the beginning, leaders needed persuading to accept universal standards. But diseases don’t respect borders and having agreed standards put neighboring countries on the same page.

We collaborate on a huge scale but never compromise standards. Tropical Data, as the program has been named since 2016, has a core partnership with four organizations: Sightsavers, the International Trachoma Initiative, the London School of Hygiene & Tropical Medicine, and RTI International. During the past 10 years, we’ve had the privilege to partner with more than 50 government ministries and partners in every country surveyed.

It can be hard trying to maintain standardization and consistency across such a global effort, but we’ve persisted and demonstrated our ability to manage large numbers of surveys, at scale.

2. Upload and check information in near real time

Dynamic information helps governments take fast, decisive action. We save time and prevent human error by recording and uploading data on smartphones rather than transposing handwritten data.

Led by health ministries, survey teams often need to reach places inaccessible by road, wading rivers, and walking long distances to settlements that may have more than one name, have been abandoned, or don’t even appear on a map. In order to then upload the data in a timely manner, surveyors need to ensure there is a system in place to reach connection spots depending on the infrastructure in different areas.

Once uploaded, our data team and country representatives scrutinize the data, checking for potential issues, and cross-checking GPS locations. Because everything happens in near real time, we can find errors and inconsistencies quickly. This makes it easier to correct data if needed.

3. Trust is key

To get data people trust, you need people to trust you. There’s no point in surveyors walking to remote places if no one will let them check their eyes when they arrive. 

Before the survey, our teams will speak with political, religious, and village leaders, building trust so that the community is sensitized and happy to let graders into their homes to examine the family’s eyes and see where they get their water and what toilet facilities they have access to.

At the other end of the scale, we’ve worked hard to make sure that each health ministry feels confident that we protect their data and won't release it to anyone without express permission.

A vision for global health data

Global health needs international vision and determined funders. The process of data collection isn’t ‘sexy,’ it doesn’t guarantee media headlines, but it gets results. With seemingly endless demands on public purses, we must keep making the case to fund robust surveys and data collection across borders.

Trachoma mapping began when the United Kingdom was still firmly committed to neglected tropical diseases and its support got the project off the ground and kept it growing for the first four years as the Global Trachoma Mapping Project. Our work as Tropical Data is now funded by the U.S. Agency for International Development’s Act to End NTDs | East program, the International Trachoma Initiative, and Sightsavers.

I’m very proud of what we’ve accomplished over the past decade, but we can’t afford to drop the baton now. With continued efforts and funding we hope to see trachoma globally eliminated as a public health problem within the next 10 years. I wish my colleagues working on other infectious diseases similar success.