Health data: everyone’s business
there are also risks of missed use (as in missed opportunities to leverage data for public benefit) or, alarmingly, misuse of our data (such as misuse of patient data that leads to large-scale privacy infringements). Despite the potential benefits and risks, health data remains poorly governed at the national, regional and global levels. Many countries have developed important regulations and policies for data protection and data security but pay insufficient attention to the specific governance considerations required for health data and how to strike the right balance between protecting individual rights and enabling positive use of health data for public benefit. Some governments are taking steps to address this, but the overall landscape is fragmented. There is no consensus among countries on what good (and equitable) health data governance regulation looks like and what the minimum standards should be across public health systems. Nor has there been sufficient discussion or action to learn from the We should all have a say in how our health data is collected, managed, used, stored and disposed of, as while exponential increases in the amount of data available present opportunities to improve health outcomes, they also risk data misuse and privacy infringements
O f all the data generated about us every day, our health data is among the most personal and sensitive. Our interactions online and offline leave a continuous trail that tells a story about our past, current and future health. Data can be used to predict, prevent and even influence our health outcomes. Our health data, when combined with that of others, is also a huge resource for public health. More and better health data can improve policymaking, programmes and resource allocation. However, we need to find ways to maximise the potential of health data to accelerate progress on universal health coverage and other health goals while also ensuring the right safeguards are in place to protect individuals’ privacy and rights. The need for improved health data governance has become even more salient with the rapid transformation of our health systems due to the digital revolution. Exponential increases in the amount of data available presents a double-edged sword. On the one hand, there are huge opportunities to leverage data to improve health outcomes. On the other hand, in the absence of robust governance systems,
By Mathilde Forslund, executive director, Transform Health
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Health: A Political Choice – From Fragmentation to Integration
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