Putting the impact of health data under the microscope
We live in a world where policymakers’ decisions related to public health tend to be backed by solid data evidence. The COVID-19 crisis perfectly illustrates this, with governmental measures across Europe being constantly justified by means of data gathered by independent experts. But it also shows how any issues in the transmission of information can quickly backfire. “We only have limited visibility of the actual impact of data on healthcare provision, management and policymaking,” says Marie Delnord, Marie Skłodowka-Curie fellow at Sciensano, the Belgian Institute of Health, and lead investigator for the project BAHCI (Bringing a health claim to information: Measuring the impact of health data on the health outcomes of European citizens). “Let’s say for instance that we have a national public health report fresh off the press, or clinical guidelines that have just been developed. What happens and what should ideally happen next? The lack of such feedback limits our capacity to assess the impact of health information (HI) systems on healthcare.” With BAHCI, Delnord aimed to bridge the gap between science and decision-making. She developed a conceptual framework that can monitor and support the process of knowledge translation into concrete outcomes. This is a new research avenue, as the focus rather used to be placed on data accuracy and quality assessment of national HI systems. Instead, BAHCI aims to determine the societal impact of investment in health data. Its approach accommodates structural differences across Member States’ HI systems, different types of outputs and innovations (AI, big data, etc.) and the wide range of stakeholders involved.
A knowledge translation framework for all Member States
“We initially conducted an extensive review of existing knowledge translation frameworks and found none covering the health system overall. We ended up developing our own around four main domains of assessment. These are: the production of high-quality evidence by trusted entities at the right level of intervention (HI evidence quality); access to and availability of such evidence (HI system responsiveness); how this evidence is applied to the health system (stakeholder engagement); and the use of evidence across sectors beyond healthcare and by civil society (knowledge integration),” Delnord explains. From there, Delnord proceeded to engage 120 public health professionals who agreed on a list of 30 criteria to monitor knowledge translation capacity within 38 countries. The project’s web-based tool was then piloted in 15 countries and in Belgium specifically in the field of precision oncology, to evaluate the uptake of next generation sequencing guidelines and testing routine clinical practice. Although the project is now completed, Delnord doesn’t rule out further use of evidence in other priority health areas such as maternal and child health, or to test associations with health outcomes. The project team learned several lessons from COVID-19 as well. As Delnord notes: “Rapidly leveraging evidence for intervention has been the key issue in 2020. Meanwhile, the strengths and limitations of routine HI systems across Europe were also exposed. Since the early days of the pandemic, we got to see how health data discrepancies and information gaps affect the capacity for coordinated intervention. Case definitions varied across countries, while fake news competed with scientific evidence. This all confirmed the necessity to proactively engage a broad range of players with scientific evidence.” BAHCI effectively addresses a growing problem faced by society, only made more pressing by COVID-19: the need for more transparency and accountability in the use of health data and scientific evidence by policymakers. By getting knowledge translation right, the project can encourage experts to not only provide data but also help guide intervention. Its reference framework can also be key to building the future European Health Data Space, which will support health data sharing, exchange and research across EU Member States.
Keywords
BAHCI, health data, policy, healthcare
