EMIF: “Digital Citizen, Digital Patient”

Executive Summary – Key points for successful deployment

1. Build an inclusive ecosystem that is conducive to health-data-driven research.
2. At an EU and member state level, legislators must look to create a trustworthy environment that fosters data sharing.
3. There must be active participation of all stakeholders and especially of citizens, both in sickness and in health issues.
4. Digital literacy must be taken to a higher level to promote equity and encourage participation.
5. Patients have rights but they also have duties.
6. There must be active collaboration – no stakeholder can go it alone, especially not the pharmaceutical industry.
7. Start by understanding each other’s needs and use this understanding to engender trust.
8. Collaborations needed to combine cohort data to increase the power of their analyses.
9. Successes must be leveraged faster to spread the benefits, and failures should be communicated in full to avoid duplication and to ensure that the same mistakes are not made again.
10. Remember that trust and trustworthiness are gained slowly but can be lost in an instant.
11. There should be a push to make data more mobile, easier to find and access, interoperable and reusable.
12. As with the rigour of randomised controlled trials, there must be robust methodologies for turning real-world data into real-world evidence.

Building on EMIF, now is the time to debunk the mantra that data is the new oil and demonstrate that it is an infinite reusable resource.