Andrew Boulle, PhD
Professor in Public Health Medicine at the University of Cape Town, South Africa
Q: What’s your background?
A: I trained in medicine (which is an undergraduate course in South Africa) and later did both residency/registrar training in public health as well as a master’s and PhD in public health and epidemiology. Working in the country with the largest HIV burden in the world, much of my work has centered on HIV cohort epidemiology and service delivery for people living with HIV. In the last decade my main focus has shifted to supporting the development of a data center for all person level health data for public sector clients in the Western Cape Province.
Q: How did you get into the linkage space?
A: In the early 2000s, the South African government was opposed to the provision of antiretroviral therapy (ART) for people living with HIV, in spite of the enormous burden and ongoing mortality due to HIV at the time. In defiance of the national government, Médecins Sans Frontières (MSF) partnered with the local government in the Western Cape to provide treatment for HIV in Khayelitsha, the area with the highest burden of HIV in the Province at the time. I was privileged to work closely with MSF, helping assemble the data from this initiative to demonstrate the feasibility and effectiveness of treatment in this setting, as an advocacy project.
As the numbers of patients on ART increased, the need arose to link with pathology data from the laboratory services, mortality data from the national population register, and tuberculosis data from the national tuberculosis recording system, among others. This was the start of a professional journey which has focused on building data resources and software tools to support service delivery and research, focusing on routine information systems, and heavily reliant on data linkage.
Q: What was some of your early linkage work? What are you working on now?
A: As described above, my early linkage work sought to assemble and enrich HIV treatment cohorts, where we also developed a data center for collaborative cohort analyses. This led naturally to supporting the linkage of all routine public sector health data by the provincial government health services, initially supported by an NIH project to explore the safety of antiretrovirals in pregnancy, where there was a concern about associations between some drugs and neural tube defects.
The Provincial Health Data Centre (PHDC) has now been in existence for ten years, and doubles as a health information exchange for a variety of operational systems, in addition to supporting both operational and research-funded analytical work. The PHDC was instrumental in the COVID-19 response, enabling rapid analyses of associations with mortality and vaccine effectiveness, supports an ongoing pregnancy exposure and birth defects surveillance registry, and has recently integrated a health and demographic surveillance site for two urban communities.
Q: How did you get involved with IPDLN?
A: I heard about the upcoming meeting in Banff in 2018 from a colleague. I might have been slightly biased by the location (which like many people I associated with a film festival on mountain adventure), but the focus of the meeting seemed so closely aligned with what we were doing that I mobilized to get there, in spite of it being almost the antipode of Cape Town (not that Chicago is much closer!). I subsequently attended and encouraged colleagues to attend future meetings. We have also published in the network journal which provides a unique mechanism for sharing data linkage work.
Q: How do you see the future population data linkage?
A: In South Africa and many countries in the region, the universal availability of reliable civil identifiers is unlikely in the near future, which will necessitate the ongoing need for mindful data linkage which can accommodate uncertainty. Advances in technology will constantly impact how this can be done, and changes in data governance standards will likely require secure data environments as obligatory infrastructure.