Achieve equity in health data systems

Researchers, policymakers and public health experts from around the continent convened for two days of robust discussion on fostering practical pathways toward trustworthy, people-centred health data systems for Africa.

The event, organised by the African Health Data Systems (AHDS) – a University of Cape Town (UCT)-based research project, was held as a pre-conference session on Friday, 4 September, and Saturday, 5 September, ahead of the 18th World Congress on Public Health. The session was titled: “Future directions of African health data systems: Public trust and data governance”. It was organised to accelerate interoperable and equitable health data integration across the continent.

The event was funded by the Wellcome Trust – a global foundation based in London that funds science and research that ultimately improves human health and saves lives.

The idea

Reflecting on the 6th Data Science for Health Discovery and Innovation in Africa (DSI-Africa) meeting held in Mombasa, Kenya, earlier this year Dr Michelle Skelton said delegates heard of how strengthening trust in data sharing, addressing uneven data quality and digitisation are essential to move the continent forward. Dr Skelton, who is based in the Division of Computational Biology in UCT’s Faculty of Health Sciences, is project lead for the AHDS.

That meeting set the wheels in motion for the pre-conference session, which was organised to get various role-players into a room to brainstorm and share ideas on how best to:

• develop a shared set of key terms and principles for public trust, accountability, as well as a social contract for health data use
• build a shared understanding of data governance and ethics concepts
• map initial alignment and relationship needs across stakeholder groups
• agree on a shortlist of concrete benefits, risks and open questions around data sharing to inform subsequent workshops and tools.

Compared to the rest of the world, Skelton said, Africa consistently scores lower in data governance. This, she added, is based largely on data quality, time and protection regulations.

“That says a lot about how we use data because it’s an amazing resource. But the fact that we struggle with protection regulations means that [we need to] fix our sovereignty,” she said.

The priorities

Addressing the audience, Emma Rawson Te-Patu, the president of the World Federation of Public Health Associations, said a large part of her work is making sure patients get what they need, when they need it and where they need it most. Therefore, she stressed that when working with and holding personal information, it is important that it is secured.

“When I say handling, [I mean] the governance, the accountability to the people whose data we’re working with, the systems that it’s held within, the tools that we use to work with it, and the people that make decisions over how all of those things get done,” Rawson Te-Patu said.

She said when leaders in public health think about governance, decision-making, priority setting and resource distribution, they must consider millions of people around the world – especially marginalised groups who are affected by various burdens of disease.

Missing important issues

Rawson Te-Patu said there are important issues that many people do not consider when thinking about the way in which they create data systems and develop interventions for the population.

She said questions such as who these systems and interventions are aimed at and whether targeted individuals’ needs have been taken into consideration are often not answered. Another key question, she pointed out, is answering how data collection benefits the individual.

“We need to be considering [the following]: How am I operating and working within a system, or how am I being the creator of a new system or set of tools? How am I making decisions over things that are really important to the outcomes of people’s lives and what [are] the systemic things that I can be part of changing?” she said.

“Everything in public health touches on the wellbeing of every human being on the planet. That means that every single person is responsible and obliged to be working towards equity in everything that they do.”