African researchers are calling for common rules on health data as differences in national policies and research practices make it difficult to share information across borders. Dr Agnes Kiragga, who leads data science at the African Population and Health Research Center, said data governance must begin with researchers and institutions before reaching the national and continental level. ALSO READ: How digital health is helping reduce maternal deaths “Governance starts at the research level. Researchers need to consider how they share their data before it gets to the institutional level,” she said at the Africa HealthTech Summit in Kigali on Thursday, October 1. Kiragga said research institutions need clear frameworks for sharing data, but cross-border research becomes complicated because each country has its own requirements for handling personal information. In Ethiopia, for example, data must remain on local infrastructure, while in Senegal, data can only be shared if the country receiving it has sufficient data protection measures. Kenya and Cameroon have their own requirements, making it important for researchers to understand and comply with the rules in each country. She said common standards are needed so health information collected in different countries can be understood and analysed across borders. “Africa also needs trained data stewards to manage datasets after research projects end, including storing, labelling and making the information findable for other researchers.” Rwanda’s growing health data Claudel Sebaganwa, an eHealth adviser at the Ministry of Health, said Rwanda’s digital health systems are creating more information that can be used for research. He said community health workers use an electronic medical record that is integrated with the National Health Intelligence Centre. The system captures information on patients, diseases, medicines, laboratory services and pharmacies. “The patient, the moment they get into the clinical settings, all the data is recorded electronically. A community health worker is able to record all households in the country,” Sebaganwa said. Rwanda has a data privacy law and a data-sharing policy to guide how information is managed. Data is cleaned, categorised and modelled before it is used. Sebaganwa said continental data frameworks must be translated into national systems while taking differences in countries’ levels of digital maturity into account. Data starts with patients Dr Elizabeth Wangari Mwanika, a clinical researcher, said the quality of information available for research depends on what is recorded when patients receive care. “Before health data is put onto the registries or in research databases, it starts with the clinician and the patient,” she said. Mwanika said many African health systems still use paper records, while electronic medical records are often unable to share information between systems. As a result, some information can be missing by the time the data reaches researchers and statisticians. She said patients, community health workers and clinicians should be involved in decisions about how health data is collected and used. “Stewardship doesn’t just stop at the organisations or institutions. It goes all the way to the community health worker, community health promoter, and the patient too. Patients should understand what they are consenting to and how the research findings will benefit them. Researchers should also return to the communities with the findings,” Mwanika said. Keeping data local while supporting cross-border research Dr Michelle Skelton, a principal investigator at the University of Cape Town, said data used for research needs to come from the people the research is meant to serve. She gave the example of a study on children with HIV and tuberculosis in East and Southern Africa. The researchers found differences between children in Uganda and those in Botswana and Eswatini, meaning a model developed using data from one population may not work in another. “This is really a mechanism of creating models of diagnosis for local populations and for purpose, using local data,” Skelton said. Kiragga said countries can increasingly analyse data without moving the underlying information across borders by sending analytical code to where the data is stored. “Do not pick the data from the source but let the code go to the data, analyse the results, then use privacy-enhancing techniques to pull the datasets together,” she said.
