Shaping a virtuous cycle of trust towards a data-driven healthcare system
Millions of people in Africa struggle to access quality healthcare because of poor healthcare systems. These systems are overburdened and cannot catch up with growing demand, including due to the rise in non-communicable diseases (NCDs) and infectious diseases. Limited risk pooling and prepayment mechanisms continue to support fragmented and inefficient healthcare systems. The lack of information on the availability, use, and quality of services hampers investments, while weak and fragmented data systems fail to provide decision makers the information needed for the efficient and effective use of resources.
This creates a vicious cycle of high risk and low trust, leading to suboptimal healthcare systems.
Furthermore, reliance on external funding leaves healthcare systems vulnerable, as shifting global political priorities and reductions in foreign aid threaten the continuity of health services. A dramatic shift is needed to ensure resilient healthcare systems now and in the future.
The fundamental problem of health data exchange
Fundamentally, healthcare systems are all about information exchange. This became very clear during the COVID-19 pandemic, when a lack of information on the disease, including how it impacted vulnerable groups and care needs, brought the world to a standstill and had tremendous worldwide medical and economic impact.
The healthcare information of individuals, communities, healthcare providers, and decision makers is extremely fragmented and does not flow freely. Data is stored most often by the collector of the information – for example, the doctor, insurance company, or donor program. Any initiatives to break through this fragmentation have focused on creating a centralized software system, with limited success. Stimulating a safe, trusted flow of health data exchange throughout the healthcare system has not been successful.
However, due to the widespread uptake of mobile phones, no matter where they are in the world, people now have the ability to communicate and make contracts with each other. Transaction costs have decreased significantly, leading to a huge increase in the availability of real-time, personalized services.
Healthcare could benefit from these developments more than any other sector. Yet this is where individuals remain disconnected and information fragmented, especially when it comes to primary healthcare. Why has information technology failed to transform healthcare, where it is needed most?
Healthcare information is unique, in that patients have to share it when they need care, and it mostly contains sensitive, and often negative, information that could be misused in the wrong hands.
If patients could trust that the data they share is used for their benefit to get better access to care, including care at home, and that it is only used for those purposes, the willingness to participate in data sharing would increase. If the use of collective data was institutionalized so patients could trust that it will not be used against them (e.g., by excluding high-risk patients from insurance programs), the information could be used for better resource allocation and stakeholder investments. And if the immense value of this data could be reinvested into the healthcare system, a virtuous cycle could be created where data is used to create trust in that system.
We believe that the best way to achieve this is to build data cooperatives: institutions that set the rules for fair and trusted data exchange, so all players can access the information needed for their purposes – but only that information. We believe that patients should have agency over this data exchange, by giving consent for the amount and type of information that they share. This has to be done by localizing (and not centralizing) data storage, building the health data system around the citizen.
How we are creating a virtuous cycle
PharmAccess, CarePay, and partners work on demonstrating how we can create a virtuous cycle of trust by creating patient-centric, data-driven healthcare systems. The ultimate goal is to create universal healthcare coverage through financial protection and (social) health insurances, investments, and better quality of care.
We do this through the following five objectives:
- Using digital and mobile technology, we develop innovative care, patient-centric models that demonstrate how safe data exchange between patients and primary and secondary healthcare providers creates efficient and effective care. (See the Innovative Care Models chapter)
- Introducing quality standards and a stepwise certification approach (SafeCare) to public and private partners to create transparency on and improve the quality of care. (See the Strengthening the Quality of Healthcare Services chapter)
- Stimulating investments in the healthcare system through (mobile) finance solutions, so healthcare facilities have the opportunity to invest in the quality healthcare services that they want to offer to patients. (See the Mobilizing Investments in the Health Sector chapter)
- Supporting social and private health insurances to provide digitally enabled health financing products so that people can pay for the care they need (See the Demand-Side Financing chapter)
- Supporting governments and public and private institutions with technical assistance, research, and advocacy to strengthen the infrastructure of their healthcare systems. (See the Scientific Evidence & Advocacy chapter)
Working in our focus countries – Nigeria, Ghana, Tanzania (including Zanzibar), Kenya, and most recently India – we position healthcare as a catalyst for economic growth by actively engaging both the public and private sectors to foster a virtuous cycle of trust.
