9 Oct, 2020

User-centered design to power genomics research

A comprehensive new report gathers vital feedback from research participants.

One year ago, Sano Genetics was awarded funding from Innovate UK in collaboration with Genomics England and Zetta Genomics to develop an online platform for people with genetic conditions and their carers.

The aim of the platform is to allow people to easily add information about themselves, including symptoms or lifestyle details (e.g. sleep patterns or dietary habits) not captured by a medical record, to help move research forward and find new research opportunities that could help them, someone they care for, or others like them.

Participant-led design

From the outset, it was essential to have potential users of the platform as equal partners in the design, testing and development of the platform. As part of this co-creation process, Sano held two workshops in April of this year that brought together more than 20 people who had participated in the 100,000 Genomes Project and other genetics research studies. Participants were asked to share their experiences and thoughts on what problems could be solved with a new online system, and what the highest priorities were for them.

The original plan was to host in-person workshops in London, but the team had to quickly pivot to run them over Zoom. A silver lining to this approach was that it enabled the participation of a much more diverse participant pool from across the UK and Europe than would have been possible with a meeting in London.

User feedback is key

The team learned an enormous amount from the participants who attended these workshops and put the findings together into an 18-page report. These findings, alongside a survey polling a much larger group of people and in-depth user testing, will continue to define the development of this new platform, which is planned for release to early adopters in 2021.

It is also fantastic to see that the development of this platform falls squarely in line with several of the priority areas in the new Genome UK strategy.

Image outling key steps in the Genome UK strategy
Source: Genome UK

This is exciting news for the future of healthcare and medical research and it is hoped that this report can help others to see the value of patient and participant involvement from the earliest stages of research.

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