Joining forces with patient communities to drive FAIR data

On 3 March, the second international event on Duchenne data sharing took place, reflecting the Duchenne community’s on-going belief in the power of optimizing the reuse of data from Duchenne Muscular Dystrophy (DMD) patients. To spread awareness of the benefits of Findable, Accessible, Interoperable, Reusable (FAIR), the Duchenne Parent Project used this year’s event to launch a short animation designed to encourage patients, their families and the wider Duchenne community to be ‘FAIRaware’ and to understand ‘what FAIR is’ and ‘why FAIR matters’.

Nawel van Lin FAIR Data Steward at Radboudumc who worked on the new animation, explains her approach: “Setting up this international event on FAIR data sharing for Duchenne was exciting and challenging in equal measure. While it was the ideal opportunity to create something new, specially targeted to a lay-audience who had no or little knowledge on FAIR, it was pretty daunting to capture the essence of what FAIR is about in a two-minute animation. The script for the voiceover was the trickiest bit, needing lots of valuable feedback from colleagues. Once the storyboard was complete, it took five days to bring the video to life. We were all over the moon with the result!“

What’s key about the animation is that it presents FAIR from the perspective of one patient with DMD, making the “what’s in it for me” of FAIR real and tangible. “I really hope it will inspire and reassure more patients on how and why their data will be shared in the future by implementing the FAIR guiding principles,” adds Nawel.

This month’s online meeting was set up following on from the first meeting on data sharing for Duchenne which took place in Amsterdam in March 2019. During this initial face-to-face event, it was proposed to take steps towards making Duchenne data FAIR for both humans and computers. The aim of the meeting was to provide an update on the progress of FAIR implementation projects, to inform the wider community of the latest FAIR developments, to share insights from practical experiences, and to discuss future steps.

Over one hundred participants attended. Amongst them were 33 Duchenne Patient Organizations from different countries, clinicians, genomics researchers, academics, pharmaceutical companies, FAIR experts and guest speakers. Together, they discussed how to set a solid base and engage more stakeholders to foster convergence in data sharing for Duchenne using FAIR protocols. Since 2019, considerable efforts have been made, including the:

• development of a Duchenne FAIR Data Declaration
• employment of a dedicated FAIR team
• start of the process to transform Duchenne registries into FAIR-enabling resources.

FAIR guiding principles encourage robust management of data and metadata (i.e. data about data) for efficient use and reuse by humans and computers. They are intended to support querying, combining and analyzing data stored in different resources to answer specific questions by different stakeholders, such as: ‘What is the incidence of Duchenne Muscular Dystrophy across Europe.’ However, this is only possible when the data exposed by various patient-led or clinical registries are FAIR.

More info, contact Nawel van Lin