The study, funded by the Wellcome Trust and completed by independent researchers Elizabeth Pisani and Stella Botchway, captures the lessons learned from the WWARN experience, including the challenge of engaging researchers to contribute data to the nascent platform. Based on a qualitative methodological approach, the study shows how WWARN’s ability to overcome this and other hurdles allowed the organisation’s ground-breaking work to flourish.
After like-minded malaria researchers launched WWARN as a global database for tracking resistance to artemisinin treatments in 2009, they had to retool their initial approach when few data contributions followed. WWARN responded by inviting potential data contributors to join collaborative study groups. This approach transformed data sharing and led to co-authored peer-reviewed articles, including some that have directly impacted global health decision-making.
“Once the Network aligned its practices with prevailing incentives, it proved both the feasibility of compiling and standardising individual patient and parasite data across hundreds of studies, and the utility of pooled analyses in guiding treatment policy,” Pisani and Botchway wrote in the study, which was published in Wellcome Open Research.
After modifying its approach, WWARN engaged a collaborator network of more than 260 partners worldwide, and collated data from more than 150,000 individual patients recruited in clinical trials on artemisinin-based combination treatments (ACTs).
In addition to the challenge of acquiring data, the case study also highlights efforts needed to curate very different data sets in a wide variety of formats, and to create viable governance structures to protect and manage WWARN’s archive.
The study describes WWARN’s resource investment as “substantial”, but notes the costs savings achieved as the organisation applies its learning and approach to new disease areas through the launch last year of the Infectious Diseases Data Observatory (IDDO), WWARN’s umbrella organisation.
“WWARN’s procedures, informatics tools and policies are now being adapted for other diseases far more quickly and cheaply,” the study says. “The Network has developed a solid foundation on which other data sharing infrastructure can be built.”
WWARN staff said they were pleased the organisation’s experience could help advance data sharing practices to improve public health, now and in the future.
“It is important for us to have an independent review of our work,” said Director, Philippe Guérin. It is very gratifying to see WWARN’s successes recognised, but what really matters is that we apply these lessons to current and future data sharing practices. This is exactly what we are trying to do at IDDO, where we have launched research collaborations in several poverty-related disease areas that currently receive very limited attention – including Ebola, visceral leishmaniasis, schistosomiasis and soil-transmitted helminth infections.”
Pisani E and Botchway S. Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study [version 1; referees: 2 approved]. Wellcome Open Res 2017, 2:63 (doi: 10.12688/wellcomeopenres.12259.1)