Health data has already transformed public health in some areas and has great potential to help prevent illness, improve treatments and access to them, as well as reduce unnecessary deaths. There are already numerous examples of situations in which this has happened. However, to truly harness the power of health data, it needs to be safely stored, shared and used effectively. DataSavesLives is a multi-stakeholder initiative that aims to raise wider public awareness of the importance and value of health data, and to facilitate open discussions on this topic between health stakeholders. The DataSavesLives toolkit was co-developed by a group of patient organisation representatives and advocates, including Alzheimer Europe, and is designed to equip these organisations and individuals with the information and materials they need to have constructive dialogues about health data use. The 2022 European Patients’ Forum (EPF) Congress was held in Brussels between 23-24 June, under the banner “Continuing the conversation on digital transformation”. It brought together representatives of the EPF member organisations, patient advocates, industry, regulators and researchers, for discussions around real-world data use, data sharing, digital health and health literacy, among others.
The DataSavesLives interactive session at the 2022 European Patients’ Forum (EPF) Congress in Brussels addressed three specific areas: engaging with digital health tools (moderated by Estefania Cordero of EPF); communicating effectively about health data (moderated by Lars Münter, of the Danish Committee for Health Education) and risks and benefits of engaging with health data initiatives (moderated by Angela Bradshaw of Alzheimer Europe). During these interactive breakout sessions, audience members tested and trialled tools from the DataSavesLives toolkit, and exchanged ideas for an upcoming training Bootcamp to take place in October 2022. Feedback from session participants emphasised the importance of transparency, trustworthiness and meaningful involvement of patients and caregivers in health data initiatives and developments. To access the DataSavesLives toolkit: https://datasaveslives.eu/toolkit