On 20 October, 2016 ELF was invited to take part in a meeting to discuss the issues surrounding management of patient data within research at the European Parliament.
The session, organised as part of the EU-funded eTRIKS project, was held in a ‘Play-Decide’ format, where participants each took on the roles of the different stakeholders involved in order to think about the associated challenges and what some of the solutions could be.
ELF sat alongside patients – including members of the U-BIOPRED Patient Input Platform, patient organisations, non-governmental organisations, researchers and policymakers.
Following the roleplay exercise, there was a group conversation about the issues discussed and potential solutions. Throughout the session, a patient–researcher relationship based on mutual trust emerged as a key requirement.
Most proposed ways of addressing these problems involved education. It was stressed that any type of public education must be from a neutral perspective that highlighted both the benefits and potential risks of a person’s data being submitted in research.
In addition, the group discussed the need for legal protection to ensure that a person’s data could not be accessed and used in ways that would negatively impact or discriminate against them.
We will keep you updated on any outcomes of the session and project in due course.
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