Data for the public good
PharmAccess is striving for…
- The development of new data models in which end customers – patients and facilities – see a return on the value of their data when shared with other parties
- Governments adopting fair data principles which ensure users control their own data.
Fair data is an important consideration as health systems, governments, and funders continue to digitalize. PharmAccess is working towards a fair data model in which users control their own data – including who has access to it – and that ensures data is used for the public good, to improve care and health outcomes for people. We believe governments in sub-Saharan Africa should develop frameworks for the fair use of data now, before big tech corporations establish themselves widely in the region’s health sector in a way that means people do not benefit from the data they share.
Introduction
Data has the power to pave the way to higher quality, more accessible healthcare in sub-Saharan Africa. Reliable data can have a positive impact for all involved in healthcare, from empowering patients to manage their own health to enabling providers to improve quality of care and increase efficiencies. When data is transparent, it can provide insights beyond the single healthcare facility, contributing to broader improvements and driving the journey towards universal health coverage (UHC). Yet there are potential problems with the wide use of data in healthcare. Many big tech companies are interested in collecting clinical data from healthcare facilities and directly from patients to boost profits and influence markets. Without agreements on the ownership and fair use of data, this could mean the end customers – patients and facilities – do not see a return on the value of their data. Our view at PharmAccess is that data is valuable, and when others use it, that value must return to the user. Importantly, we believe the user must be able to choose whether they share their data, and with whom. We are committed to using data for the public good, to improve care and health outcomes for people. As part of this commitment, we are working on establishing a project with the African Virus Outbreak Data Network (VODAN) to test a fair data principle.
Looking into the future: data as public good
Healthcare systems in sub-Saharan Africa need to be strengthened, not just in terms of their quality and accessibility, but also digitally. The digitalization of healthcare is key to making quality care accessible and affordable, and it relies on data. Health data is widespread and fragmented. People use apps and websites to track their health and find information about their illnesses. Medical history data is stored in facilities’ systems, which are rarely inter-connected and usually inaccessible to the patients. Yet the information held in large healthcare data pools is potentially invaluable. When considering how to ensure healthcare data is used for the public good, ownership is a key consideration. Who owns, has access to and can manage and share this data? PharmAccess believes that citizens must be recognized and protected as the ultimate owners and beneficiaries of their data. They should have control over access to that data, individually and collectively. Individual ownership will enable people to grant providers access to their medical records and health data via their smartphones, for example. But collective ownership is even more important: the true value of data will be realized when we collectively decide how it can and should be used for better research, better diagnostics and medication, and better targeted, outcome-driven healthcare. In the coming years, PharmAccess will test and implement new models that monetize this value as a public good and translate it into social and economic benefits for a healthier society. This is an urgent task and a new key theme for PharmAccess, as many large companies are entering the health sector and could harness this value for profit in the short-term, to the detriment of longer-term societal benefits.