//Telling the story of a genomics dialogue

Telling the story of a genomics dialogue

Author: Simon Wilde, Engagement Director at Genomics England

Genomics England’s second foray into Sciencewise-funded public dialogue is now complete.  The result is a fascinating and insight-filled report on the use of whole genome sequencing in newborn screening that has been met with great interest amongst many different people and organisations. It’s not an exaggeration to say that the findings from the dialogue, commissioned in partnership with the UK National Screening Committee (UK NSC) and run by Hopkins van Mil, have formed the bedrock of Genomics England’s planning for a Newborn Genomics pilot research programme.

Our first experience of Sciencewise public dialogue in 2019 revealed a broad sweep of public attitudes to the use of genomic medicine in the NHS and in particular, whether genomics would alter the social contract between the public and the NHS (spoiler – it would). Coming ahead of the roll-out of the NHS Genomic Medicine Service, the dialogue was ‘a vital and timely contribution’ and ‘essential reading for everyone with an interest’ in the development of genomics in healthcare, according to then Chief Medical Officer Dame Sally Davies.

In some similar, but also in some very different ways, both dialogues have had an enormous impact on Genomics England’s work. In a blog I wrote after the first dialogue, I described how the different elements of the dialogue process, including the timing, the oversight of the project, the involvement of expert participants and the effort we put into ensuring ‘buy-in’ from our many and varied stakeholders, contributed to the success of the project as a whole.

As someone who has been fortunate enough to work once again as a commissioner and manager of another large-scale dialogue, I’d like to take this opportunity to talk about how we have applied some of the learning and experiences from the first project to the second, and in particular how we developed some of the communications and engagement elements so that our most recent dialogue was able to have the wider impact and awareness that we needed it to achieve. Here are my five key learning points!

  1. Knowing when and how to ‘deploy’ a dialogue

Genomics England’s continued existence rests on our ability to ensure that genomics and its use in the NHS carries public acceptance and support. In the specific context of newborn sequencing, this is more crucial than ever. Thanks to our previous experience of dialogue, we knew, when asked to look into newborn sequencing by the Government, that commissioning a dialogue would be essential.

  1. Managing expectations – and partnership working

Having a good sense of what a dialogue involves helped both in terms of gaining internal buy-in – managing expectations and ambitions for the project – and the set-up of an oversight group and the tendering process. This enabled us (with Sciencewise’s invaluable support) to concentrate on other aspects – including the fact that this time round, we had a partner in the UK National Screening Committee, who were co-funding and co-managing the project. Each partner had slightly different perspectives on the topic, for instance relating to the nature of outputs, that would need to be uncovered. It’s testament to the close working relationship that we created between Genomics England and the UK NSC that we were able to find ways through these challenges to mutual benefit – a relationship that continues as we build plans for a pilot research programme.

  1. Ongoing communication about the dialogue

Another area that we focused on right from the start was the interest and expectations of a wide range of different groups and individuals who would be closely following both organisations’ responses to, and plans beyond the dialogue. We wanted to make sure that the dialogue process wasn’t some kind of ‘black box’ where there is a flurry of activity prior to it, a fanfare at the end but no real understanding or involvement in the journey or process linking them.

We managed this in a number of ways. Getting the right ingredients for the oversight group is always a key part of the process but we took extra care to balance the wide range of different views and perspectives around the oversight table. We encouraged members to share the discussions and plans with their own networks, maintained regular contact between meetings with group members, and invited discussion on who beyond the oversight group itself we could tap into for expertise, information, perspectives and case studies.

  1. ‘Socialising’ the findings

One innovation we are particularly proud of was a series of stakeholder events organised before the official launch of the findings, which provided space to pore over and discuss the findings and hone the final version of the report.  This meant that there were no surprises once we published the findings. It contributed to the success of the launch event, and enabled us to move quickly to embedding what we’d found in our ongoing work. A good example of this was a round-table event we held quite soon after the launch which brought together public, patient and participant representatives with life-science industry figures to begin discussions about creating a model for data-sharing  that maintains and strengthens trust with the public. We were able to have this discussion in a way that built directly on the dialogue findings.

  1. Framing the project as part of the bigger picture

My final thought is around how a set-piece project like the dialogue sits within the wider context of our ongoing engagement with participants and the public. Whilst providing a fantastic grounding in the key issues around genomics and newborn screening, we’ve been keen to stress that the ‘Sciencewise bit’ is just a (vital) piece in a wider jigsaw of a conversations.

Our launch event was carefully planned and executed as ‘a work-in-progress’. This may be one reason why we had over 1000 virtual attendees joining the session, and so far over 1700 views of the event recording.  And we chose to frame our findings, not as a series of presentations, but as a strong narrative telling the ‘story so far’ of newborn sequencing. As our planning continues for the pilot research programme, we know that co-design, rooting the public’s perspectives in existing and emerging ethical issues, and carrying public trust in our work is an essential part of what we have to do.