, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 3
Thank you very much. How reliant is healthcare research on good data, and how is it possible to ensure that the data is reliable and sufficiently comprehensive?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 3
Thank you very much for being here today. Sorry, I've just put my questions down somewhere; here we go. We were actually just saying before—. For the public at home, especially, and us, could you explain what the term 'big data' means, please?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Do you have the powers, or is that a political decision?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Can I just ask you as well, when it is done—and I do understand everything you're saying as well; it is frustrating, and I know it's frustrating for you—will you have the power to enforce it so that it has to be all Wales?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Yes. People in England have had this, basically, since 2018. You were given the code in 2021, and people in Wales still don't have it. What's happening is you've got Swansea health board now using an application called Patients Know Best. As we mentioned…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Thank you very much. And thank you very much for coming in today and answering all these questions. Having heard everything, for me, this very much comes back to the Welsh community care information system that has no live date—I know, and I understand. But…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Okay. Fantastic. Okay. Thank you very much. Thank you, Chair.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
I have asked this before—it was when I met you in front of the Health and Social Care Committee—but about open-source data as well—. Because, obviously, we heard in the previous panel again how rich this data is and how it can be used to come up with better…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Excellent. Okay, thank you. If I can just ask one more, but I can come back to it later if we're running out of time.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
—but you can see what I mean.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
That was going to be my next question, then. So, at the moment, if I want to make an e-appointment, do an eConsult for my local GP, I have a load of questions that I have to answer, including things like, 'Have you ever had an abortion, and when did you have…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Okay.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Absolutely. Timelines would be great, or some kind of idea, because, obviously, this is risking lives, as we've heard from the coroner.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Excellent, thank you. The previous panel, as well, was very much explaining to us the benefits of having people opt in and having this data for research purposes. We actually heard, in one case—Altaf brought it back to having a patient and not having their…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
And would you say, then, that that's a political decision that hasn't been—?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 2
Thank you very much. So, we've just heard from the previous panel that, in England, they introduced this national opt-out mechanism, and it wasn't managed, really, in the best way that brought patients with them and that trust with them, and it did result in…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Absolutely, and I feel that, Ann, you said this as well. All of you have highlighted projects, but very small numbers of people who are getting this data literacy and being taught how to do this. I would probably argue myself—and Ann, I know you want to come…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Thank you. Here it says NHS Digital and NHS England, Health Data Research UK—who, Ann, you work with—Bowel Cancer Intelligence UK, and previous funders have been DATA-CAN hub for cancer and Cancer Research UK. I suppose the point that I'm making is—and, Ann…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Just in the interest of transparency, can you talk us through who funds you?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Excellent. Thank you very much. Thank you, Chair.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Thank you.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Absolutely, I agree. I can see you nodding as well, Ann. Just the last question that I was going to ask you, then: what evidence is there that public trust and confidence in data sharing varies depending on the organisations with whom the data is being…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Right, sorry. Yes, of course.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Yes, thank you very much. Just my last question, then, to—
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
How reliant is healthcare research on good-quality data, and what's needed to ensure that data is reliable and sufficiently comprehensive so that you are able to predict these disease patterns?
