Executive Summary – Key points for successful deployment
- Build an inclusive ecosystem that is conducive to health-data-driven research.
- At an EU and member state level, legislators must look to create a trustworthy environment that fosters data sharing.
- There must be active participation of all stakeholders and especially of citizens, both in sickness and in health issues.
- Digital literacy must be taken to a higher level to promote equity and encourage participation.
- Patients have rights but they also have duties.
- There must be active collaboration – no stakeholder can go it alone, especially not the pharmaceutical industry.
- Start by understanding each other’s needs and use this understanding to engender trust.
- Collaborations needed to combine cohort data to increase the power of their analyses.
- 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.
- Remember that trust and trustworthiness are gained slowly but can be lost in an instant.
- There should be a push to make data more mobile, easier to find and access, interoperable and reusable.
- 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.