6. 6. Statement: The Genomics for Precision Medicine Strategy

Part of the debate – in the Senedd at 5:04 pm on 13 June 2017.

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Photo of Vaughan Gething Vaughan Gething Labour 5:04, 13 June 2017

Thank you for the comments and questions. It’s interesting that you started with antimicrobial resistance—your sage colleague to your immediate right was part of the cross-party group on science and, actually, this was a subject of the conversation that we had last week with both David Rees and Simon Thomas—so, germane challenges for the here and now, as well as for the future, in the way in which we develop our ability to understand human conditions, and also, then, to help to treat and anticipate them.

Turning to your questions about the communication challenge, well, some of this is, if you like, the technical challenge of how you get data transferred, but I think a lot of it is actually cultural, and that’s why the genomics taskforce has actually been really instrumental in actually going proactively out to stakeholders, to want to talk to them, with the number of consultation responses that have come in, and I then expect to come back on the back of the advice that I will get from the taskforce, having had the consultation, to then announce the next stage on how we develop that. It is important that we have channels that are open, and a culture that is open about how people are able to talk to each other. Because, as I’ve said in my statement, this requires the national health service, the university sector, but it also requires the third sector and, indeed, industry to be part of the answer. And that is partly my point about how we actually pool our research, because whilst there’ll be a central laboratory function, and actually having the Wales genomic centre, a lot of that has to be virtual because you can’t expect to dissipate all of those staff around the country, but they have to be able to understand what happens within this country and, indeed, the collaboration with England—we’re part of the 100,000 Genomes Project—as well as on a wider basis, too, as well. So, I do take on board the challenge that you raise in making sure that it isn’t simply a closed shop for a small group of people in one part of the country to participate. That certainly isn’t the approach we’re taking. I hope that assurance is helpful.

On protecting data, of course, the recent cyber security attacks have highlighted the challenges that exist because there are always a group of clever unscrupulous people who are prepared to try and harvest data for their own ends. Whilst we were in a much better position than England in terms of what happened with the recent attack, none of us should take that for granted or to be triumphant about it. We need to constantly reassure ourselves that the way in which we use data is both ethical, but also that we actually properly protect sensitive patient and staff data in the way we use that across the system. The SAIL data is a good example of where we’ve got anonymised data that is of a real benefit. It’s a good example also of being a small country that can make choices on a national basis and trying to have a real sense of national mission. That’s more about what we need to do, but that will also go into the way in which we deal with clinical trials. In a number of areas in Wales, we do very well with clinical trials, but we also need to recognise that there are areas where we could do better still as well. I think this is an area where we think we could do better still again, to build on our current strengths but to also understand where we think there is a different level of both ambition and achievement to be set as well. Again, I recognise the points you make about properly protecting patient data in the way we set up our systems—both the hardware, the software, and the culture of actually the way in which those data are used.

On the points about investing in the workforce, this is one of the five themes from the action points that have come out in the strategy we’ve just consulted on—how we understand properly how we invest in our workers, to get right some of the—[Inaudible.]—with my colleague the Cabinet Secretary for Education, talking about how we get things right and about the culture of our schools. So, we understand the way in which we both need new skills and acquire those new skills from the workforce of the next generation—that we’re looking after you and me in our, hopefully, old age when we reach it, if we reach it, but also about what happens in the here and now for the people already going into our system. That’s part of the reason why the collaboration with both industry and the university sector is really important, because the workforce isn’t simply going to be about how the NHS plans its individual part of it, too. Although, in that we expect to see INTPs as we develop the strategy, and as we conclude what the strategy will be at the end of the consultation response to it, and how we expect to see that set out in individual health boards and trusts organisation INTPs, but also the work with the all-Wales medical genetic service, together with the new health education body that we’re going to create. We’ll need to take steps on the creation of that over the course of this year, in shadow form, to get ready for April 2018, when it’s up and running. So, there is an honest recognition that is set out in the strategy about what we’ll need to do and how we plan for that workforce and how we obviously—and, again, there are ethical challenges in this, too—map out a service where the health service has a very definite interest in the data that we use, that are given to the health service, and how we actually work, in a grown-up way, with people in industry as well as the higher education research sector, but you’ve got the same—[Inaudible.]—protecting the ethos of what we want to do, and the value of what we do, as opposed to giving that information to someone else to sell back to us at a profit. So, there are challenges in that, but that goes into workforce development, too.

This is particularly interesting because it is new, and we’re making choices now that we haven’t had to make, but also it goes into your point that there’s significant benefit to be gained, from a health gain point of view but also from an economic point of view as well.