When Genomics England began back in 2013, the very idea that we could sequence 100,000 genomes was an audacious one. No-one had ever done it before. And, if the technical challenge wasn’t enough, there was also an NHS transformation project to deliver, which would, if everything worked out, be the basis for a new NHS Genomic Medicine Service. Finally, for good measure, there was the development of a major research facility, which could turn genomic information into new knowledge, treatments and medicines.
It won’t surprise you to know that many people told us it couldn’t be done.
All of this extraordinary enterprise was built on one foundation; the health and sequence data of some 70,000 individuals. It was their generosity in donating their precious information to the 100,000 Genomes Project that meant not only that well over 100,00 genomes were sequenced, but that there is also now a National Genomic Research Library and an NHS Genomic Medicine Service. It is a simple fact that without them, none of this would have happened.
As Head of Engagement I argued from the outset for the meaningful involvement of participants and the creation of a Participant Panel. Of course we had already involved patients in terms of understanding their concerns and many had already helped us in the design and content of project literature. But the purpose of the Panel was to go beyond co-production and advice, valuable though that is, involving them deeply in the governance of the data. I was convinced that this would be key to building trust more widely. I also thought that patient involvement was the best way to build the best service for other patients. And so it has proved.
There were two qualifications for Panel membership. One was that your DNA (or that of the person you cared for) had to be in the dataset – ‘if you’re in it, you can be on it’ – and the other was a stipulation that members should be able to think beyond their own conditions and put themselves in other’s shoes.
The first chair was Ed Sherley-Price. His background in data security meant that, oh joy, he not only understood what questions to ask but even understood the answers. He was critically important in building the confidence and cohesion of the Panel in the early days. Subsequently we were lucky enough to have Jillian Hastings-Ward as Chair with Rebecca Middleton as her deputy and under their sure leadership, they have built a community of people with a common purpose, where every member’s unique contribution is valued. And they have clearly identified the issues of greatest importance to participants, such as continuing the quest to find a diagnosis for as many participants as possible and involving participants in research.
Genomics England was, it has to be said, a tad wary of the Panel at first, but that quickly turned to admiration, then affection and now deep and widespread respect. The Panel is able to call any member of the Genomics England staff to their meetings and they report directly to the Board. Their challenges are always thoughtful and insightful. And the Panel’s influence goes far beyond Genomics England. Simply put they are widely recognised as the exemplar of good data governance.
On a personal level, the Panel bonded closely and have become a tightly knit and highly supportive community. At the beginning, I was the one holding their hands. Now five years on, it’s the other way around. They are flying solo and I am burstingly proud of their many achievements. They have made Genomics England better, wiser, more effective and more trusted and they have ensured that participants are genuinely central to our mission. Most important of all is what they have done to ensure the best possible outcomes for participants and their families.
On your fifth birthday, be very, very proud of yourselves.
Vivienne Parry is Head of Engagement at Genomics England.
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