Survey on digital child health records by NHS Digital

[GeorgiaMumsnet]

Hello,

NHS Digital have been in touch with Mumsnet about a project as part of the NHS England Digital Child Health Strategy. They’re seeking views from parents and carers on the content of a standard for a digital child health record.

NHS Digital say:
“The project is led by the Professional Record Standards Body (PRSB), with the aim of developing a standard that is fit for purpose and can be embedded across all nations of the UK.

• The development of a standard will mean that information can be effectively shared electronically with health care professionals and made available to parents/carers through the personal electronic child health record (known as the e-red book).
• This will help ensure that every child receives the health and care support that they need by making key clinical information available online whenever and wherever it is needed.

This widespread consultation is invaluable in ensuring that all data items are meaningful, relevant, complete and fit for purpose to record/incorporate into clinical information systems.”

The survey should take approximately 20 minutes to complete and will close at 5pm on 21 August.

Thanks,
MNHQ

This is really important but a twenty minute survey is really going to put people off. Especially when the subject is so unclear and dare I say dry!

It didn't take me 20 minutes!

Glad to hear it. I will give it a try.

Done :)

Any chance we can sticky this please? It's equally as important as fresh baby food

Hi StealthPolarBear, the survey is now stickied in Active Conversations , as well as under Site Stuff, _Chat, General Health and Children's Health

Excellent thanks

I think it's really important to get this right - timely and effective sharing of medical information is crucial in my opinion. I've done the survey and encourage others to do the same.

Yes, done. With a bit of a rant in the last box!!

Excellent

I have done it. Why is there nothing about maternal experience of the birth or mental health?

6 minutes to complete it, but I couldn't stomach the long list of topics so only skimmed thru. "Formulation", what was that about? I can't see value in any of it.

That was therapeutic. It's rare I get to condemn woolly thinking so bluntly.

As I have just completed the survey, I wanted to post some of my responses publicly.

This was an unbelievably poorly designed survey, which asked inappropriate questions of the audience (in my case, a parent) while giving no opportunity to give a view on aspects of this proposal that WOULD be relevant to me.

First of all, the questions about developmental milestones ought to be asked only of experts. There is a significant evidence base to which the survey authors could refer, though, rather than having to get lots of individuals to waste their time telling you about it.

There was also a total lack of consultation on any genuinely meaningful issues around this project. I will list examples of this. As a parent, my main concerns would be around (a) protection of my child's personal data and information security, (b) whether this level of intrusion on the part of the state is justified, (c) which audiences it would be shared with, and how, (d) the ability to opt out, (e) potential benefits for me as a parent, (f) risks this could pose to me as a parent, (f) potential benefits for my child, (g) risks this could pose to my child. Alas, none of these areas were addressed at all in this so-called consultation.

Done 😁

Interesting will do the survey later. Would more people share their survey feedback on this thread? I will and found Penguin'd post very useful.

Goodness, I do market research for a living and that is a truly dreadful survey! As an degree-educated parent I was able to navigate around both the questionnaire and the awful attachement, but I would imagine that anyone someone with English as a Second language, or literacy issues would give up very quickly ... and that is exactly the audience this needs to be able to work for. I do hope they are doing some separate consultations with those groups who would find this hardest (& may need it most)

Bloody awful survey