The Human Birth, Growth, and Developing Knowledge Integration (Ki) Initiative

The issue: Stunted growth

Simba and Sean were born on the same day to families living in the same neighborhood in The Gambia. Their fathers even worked in the same lab. But at birth, Simba was 4 cm shorter than Sean; by the age of four, he was 16 cm shorter.

This measurement matters, because growth stunting like Simba’s can have serious consequences for a child’s development and survival. In fact, it is associated with lifelong disadvantages—including poorer health and an increased risk of early death. Although we know that insufficient nutrition in utero or during early life are key indicators for the disorder, we don’t yet know how to identify which children are at greatest risk and how best to intervene to keep them healthy.

For years, the Bill and Melinda Gates Foundation has funded efforts to better understand stunting, yet progress has been frustratingly slow. In part, this is because researchers from different fields have been working in isolation from one another. Those working in maternal and child health tended to focus on breastfeeding, for example, while sanitation researchers were most concerned about the provision of clean water and toilets. “No one had a complete view because they were all looking at the picture from their own perspective,” explains Dr. Steve Kern, Deputy Director of Quantitative Sciences at the Bill and Melinda Gates Foundation. “We realized that we really needed to get all of these perspectives.”

Compounding the problem, once the researchers had published a study, they’d often move on to something else. The data that they had meticulously gathered was abandoned in “data graveyards” where no one else could see or use it.

A new approach: Integrating knowledge

The Healthy Birth, Growth and Development Knowledge Integration (Ki) initiative was created in 2014. Its goal was to encourage researchers across many subfields to share what they knew about wasting and stunting—shared knowledge that could help reach a clearer understanding of the differences between children like Sean and Simba and facilitate interventions that can enable every child to meet their potential and live a healthy, productive life.

To that end, the Ki initiative has gathered “abandoned” data from 420 completed clinical and population-survey studies in 50 countries and is putting it back to work using novel analytic software that can integrate and “bridge” disparate data sets, giving researchers a much clearer picture of global trends. In turn, this data can inform the design of experiments to close these knowledge gaps.

Barriers to data-sharing

However, persuading investigators to share their data has been challenging. In fact, more than 90 percent of principal investigators were initially reluctant to participate. Dr. Kern explains: “There was this fear about what are we going to do with it? Are we going to find something interesting about the data that they haven't found?”

Often, researchers would point to barriers such as not having obtained consent, or they would say they needed their institutions’ permission to share the data. Because of widespread uncertainty around rights and permissions, these institutions will often take a conservative approach and say “no,” rather than properly looking into it, says Dr. Kern.

Solutions: Personal engagement

But once researchers understood the goals of the Ki initiative and saw how useful their “data graveyards” could be, data-sharing proved an easier sell. It helped that Dr. Shasha Jumbe, who spearheaded the data collection for the project, was so passionate about it: he grew up in Zimbabwe, and he experienced the benefits of adequate nutrition when many around him did not. “I think people could see his personal commitment to understanding this, and that did a lot to help people say, ‘Okay, I trust him,’” says Dr. Kern.

The Ki initiative also hosted regular meetings so that potential data-sharers could meet the analysts who would be working with the data they provided. “People could see, ‘okay, they're bringing in other smart people, not to outdo me, but to actually complement me,” Dr. Kern explains. In the spirit of openness, the analysts also shared research findings as the initiative progressed. “We’d say: ‘Hey, we found this insight in your data. Here's the tool we developed to find it—and in fact, you can use it too,” says Kern. “It was about creating this mentality and environment where people were sharing their insights for the sake of learning and advancing the field. And continually having a message of why we're doing it, what we want to gain out of it, and what's in it for you, individual researcher.”

The Ki initiative team also developed a secure analytics platform, strict protocols for accessing data, and clear data-use agreements to allay participants’ concerns about security and privacy. Even so, it took around three years before a significant number of collaborators were on board. “The interesting thing is that once you get enough key people together who say, 'Okay, I see the potential benefit and I think there's more to gain than I have to risk’, you hit this inflection point, where the recalcitrant ones, now their fear switches the other way,” says Dr. Kern. “Now there’s a whole group of people who are sharing and they don't want to be left out. And so, suddenly there's a mad rush for the door.”

Impact: Flourishing insights

Processing all these data took time, but insights are now starting to emerge. One recent discovery is an early signature of growth stunting, which could enable high-risk infants under six months old to be identified and targeted with specific interventions to promote weight gain before they suffer too much physical and neurological damage. Although exclusive breastfeeding is widely promoted as the best food for infants, supplementary milk may be necessary in such cases.

Analysts have also been able to confirm a strong seasonal variation in wasting or thinness, usually as a result of acute starvation or severe disease, during the summer monsoon season in India. This finding nudged researchers toward a new set of questions, such as: What is happening to cause these symptoms at this particular time of year? What interventions can we develop to avoid it?

Although some of these insights may have been possible without the Ki initiative, Dr. Kern explains, “data sharing allows you to start to see patterns that perhaps you were blind to initially, or that you couldn't tease out from your own signal and noise.”

As the Ki analysts delve deeper into the data, they plan to start organizing children into clinically coherent groups, making predictions about the risks each group faces, and designing age- and country-specific interventions to reduce those risks. These interventions will then be tested in carefully designed studies. The hope is that this will accelerate progress towards evidence-based recommendations that will enable the Simbas of this world to not only survive but thrive, wherever they live.