, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
I know that Jane Dodds wants to come in on this, but just quickly, Sarah, you had a question.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Ann, obviously you're an expert in patients with mental health challenges. They won't want everybody to know about something that's happened to them in the past. How do you, in your research, ensure that it's on a need-to-know basis and no more?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Very good. At the most basic level, if I'm away from home and I lose my glasses or I break them, I don't want to be searching around for a little card that I get given at the opticians; I want to be able to go to the nearest shop and say, 'Give me some…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
So, Ann, what role does your organisation, or indeed, coming back to our witnesses in the room, what roles are you playing in helping to improve transparency for the individual patient, but also streamline access to important data to enable us to treat people…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Thank you. That's very useful.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
For the benefit of the general public, could you just explain what 'SAIL' is, because this word has been used a couple of times?
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Okay. Robert.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Okay. But it is a complex issue, isn't it, because a GP might want to write on the notes for the benefit of their colleagues, 'This patient can be aggressive', or something like that, which you wouldn't necessarily want the patient to see.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
I just wanted to pursue, really, the state of data management in NHS Wales, because obviously, somebody with a chronic or acute illness doesn't want to be telling their story 65 times, but equally, there will be different organisations involved, so the GP…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Okay. Ann.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Thank you. The NHS has long had quite a complex process of permissions before people can do research on randomised control trials and that sort of thing and it has felt to researchers quite bureaucratic and really extensive to-ing and fro-ing, but how has…
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Chris Carrigan, I think, wants to come in.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Sarah, could you—? Ann John wants to come in on this point.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
Thank you for that excellent summary. We'll just move over to Sarah Murphy, who's got some questions for you.
, Equality and Social Justice Committee
Data justice: the use of personal data in the Welsh NHS: evidence session 1
So, for the first of our sessions on data justice and the use of personal data by the Welsh NHS, I'm very pleased to welcome Chris Carrigan, who is an expert data advisor for Use MY data, as well as Dr Robert French, and who are both here in the Senedd, and…
, Equality and Social Justice Committee
Introductions, apologies, substitutions and declarations of interest
Thank you very much. Just by way of illustration, this is a hybrid meeting, so some Members are in the room and other Members are joining us online. It's a bilingual meeting, so simultaneous translation is available from Welsh to English, and all the public…
, Equality and Social Justice Committee
Introductions, apologies, substitutions and declarations of interest
Sorry, I didn't—. I think you've frozen. I heard it's something to do with your husband. I think you're back in the room, Sioned. If you could just complete the sentence about your declaration of interest.
, Equality and Social Justice Committee
Introductions, apologies, substitutions and declarations of interest
Good morning. Welcome to the Equality and Social Justice Committee, and today we're looking at data justice and the use of personal data in the Welsh NHS. We've got three sessions. First of all, I just want to do a bit of housekeeping. We've had apologies…
, Committee for the Scrutiny of the First Minister
Ministerial scrutiny session—The co-operation agreement
Okay. We haven't got time to go on on this, but perhaps we can have a note, really, on—
, Committee for the Scrutiny of the First Minister
Ministerial scrutiny session—The co-operation agreement
But this could unseat the ambition of the Minister, and yourselves, to change the food culture and ensure every child is being fed a nourishing meal. Professor Kevin Morgan says that the real danger is that the pressures, the capacity issues in local…
, Committee for the Scrutiny of the First Minister
Ministerial scrutiny session—The co-operation agreement
Okay. To what extent are rising food prices—the ingredients for these meals—and the shortage of catering staff, the chefs that are needed to make the meals, posing a challenge to the viability and sustainability of this ambitious project?
, Committee for the Scrutiny of the First Minister
Ministerial scrutiny session—The co-operation agreement
Okay. All right. It's a complex situation, but clearly it's an important economic consideration.
, Committee for the Scrutiny of the First Minister
Ministerial scrutiny session—The co-operation agreement
In terms of making every contact count, the Welsh Government website says that you will need to register your child for free school meals, and this information will be provided to your child's school or local authority. Are we asking people about their…
, Committee for the Scrutiny of the First Minister
Ministerial scrutiny session—The co-operation agreement
Thank you. The children's commissioner says that child hunger is the No. 1 issue, so clearly there's an urgency to rolling out universal provision in primary schools where possible. Are there any local authorities who will be unable to provide the meal to…
, Committee for the Scrutiny of the First Minister
Ministerial scrutiny session—The co-operation agreement
Okay, because if you invest—
