Intro
The only way we can fight infodemics is with trusted information and better health literacy.
How dangerous are infodemics for patients?
Infodemics are very dangerous for patients. They are the disease of the internet. Unfortunately, it crosses the line from the internet into people’s lives. Misinformation has caused consequences for public health and for patients’ health through, for example, feeding into vaccine hesitancy and vaccine resistance, feeding into mistaken, non-evidence-based beliefs, or even during the pandemic, creating rushes to buy products that were inappropriate and even dangerous for patients.
What are the needs of patients in times of digital transformation?
In times of digital transformation, the first thing patients need is trust. They need to be able to trust that they receive good quality information, that the information and the data they provide to the health system is treated properly, and trust that it is used to improve their life and the life of others like them. So from that point of view, I would translate that from a digital health perspective to how can new technologies, digital technologies, how can they help make things faster, make things better, and bring better outcomes for patients.
What needs to happen at European level to promote a trustworthy information architecture?
Europe needs a trustworthy information architecture at European level. At the moment, we don’t have one. We should get one with the European health data space legislation. And for that to happen, we need to ensure that patients remain involved in the design of the information architecture and the tools that it uses, from electronic health records to all the way to national data boards That control how the data is shared with researchers and developers. And the other thing that needs to happen is a massive investment in digital and general health literacy for patients, for citizens.
Expert
Anca Toma is the Executive Director of the European Patients’ Forum (EPF) which acts as an intermediary between the patient community and EU policymakers. Anca has over 15 years of experience in European health policy working in policy advocacy, strategic communications, developing and coordinating successful pan-European advocacy campaigns.
