[Closed] NHS leaflet "Better Information Means Better Care"

There [i]is[/i] an argument for the value of anonymised data in clinical research.

That said, I bet insurance companies are salivating at the thought of it.

Don't disagree. But from what I get in the blurb the data is NOT anonymised, there isn't an option to anonymise it and they may sell to insurance companies.

There's good and bad to this. I have [i]some[/i] insight into what's happening. The public nearly didn't get told. Oops. This has resulted in a) a hastily cobbled together leaflet landing on our door mats, and b) panic in charity and research world as they realise people can opt out and therefore compromise projects - [url= http://wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/Patient-records/index.htm ]wellcome trust campaign[/url]

OP's link is a worthwhile read.

Personally I believe that data can inform care and planning of services, and that it will be useful for CCGs, but there is a darker side re. insurance and so forth. And what happens when our children are old enough to opt out? Will they get a leaflet too?

Yep. Known about it for ages and letter written. 🙂 Have also advised my kids to object.

Edit: you can also opt out of Summary Care Records.

Is it just me that couldn't give a stuff?

Happy with my records being used to advance research and to price insurance correctly.

Has anyone seen their medical records to check for accuracy?

Is it just me that couldn't give a stuff?

Ya know johndoh. I usually feel this way (e.g. NSA/Grauniad/Snowden type revelations) but in this instance having read the link I posted I am surprised to find that I do care and I do object.

I have just read it (albeit scanned most of it) and still don't object. I guess I just feel that there isn't anything about me that I want (or be bothered to) hide.

At the end of the day, I guess I have always been of the assumption that *they* know much more about every one of us that we could imagine so let them just get on with it.

To some extent this use to happen before anyway, in the past Universities have had access to major datasets on illness going back to around the setup of the NHS. In each case name, postcode, gender etc. were all there. I think in some ways it is actually a real help to researchers having big data like this and could make the UK very attractive to companies, Uni's etc. to do research in. Downside is possible abuse of the system, but that's the risk you have when you want a medical system run by the state.

Two interesting links:

http://www.ehi.co.uk/insight/analysis/1246/care.data:-a-row-waiting-to-happen

http://www.sochealth.co.uk/2014/01/28/actually-promoting-nhs-choice-control-current-caredata-arrangements/

interesting reading 99% of it is infact brilliant and an excellent way to help improve the health of the nation

despite the knee jerkism above it all seems pretty good and objecting is only really hurting yourself and your families, YOUR NAME WILL NOT BE INCLUDED IN THE DATA

the only identifier is your NHS number, how easy is it for someone to find out your NHS number? pretty hard I suspect.

the problem with it is this

[s]Pharmaceutical companies
Health charities
Universities and other academic organisations
Hospital trusts
Medical Royal Colleges
Information intermediaries
Think-tanks[/s]
Commercial companies
Insurance companies

even the last one seems OK, however with the governments moves toward a privatised healthcare system and in particular the present health secretary being a vacuous, self-serving, slimy, yesman and jeremy hunt of the highest order it is something of a worry
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but still on balance I think its worth it

Is it just me that couldn't give a stuff?

Nope, they're welcome to mine if they like.

Has anyone seen their medical records to check for accuracy?

Mine are crap, allsorts of mistakes.

The state commoditises you and you don't care? Baaaaaaa...

Your information can be used to help others and you don't care? Naaaaaaaa...

I'm gonna sell your data and make gazillions? Taaaaaaaaaaaa......

Insurance companies

I wouldn't want an insurance company to get it's hands on peoples individual health records. Deanonymizing data can be hard but it can also be relatively easy. The thought of moving to an ever more privatised NHS or a future where everyone needs private health insurance where they can refuse to insure you or make premiums incredibly expensive to to personal health care data and/or data mining isnt one I look forward.

I have no problem with appropriate data being made available to researchers in appropriate institutions but the system described above doesn't seem to meet the criteria I would want.

I wouldn't want an insurance company to get it's hands on peoples individual health records

Why not, pensions are insurance, you're just betting on a different outcome.

Be healthy all your life and you'll pay low health insurance, but get a crap pension offer.

Smoke all your life you'll get all kinds of problems but a much better pension offer!

Eventualy it doesn't matter if you were better or worse than average, if you're a heavy smoker you'll probably not want your records released to a health insurer, so if all the non-smokers do release them to get lower premiums, they'll lump everyone elses premiums together.

I've opted out. To help the general NHS and public health is a good thing. My partner has worked in the NHS though and its security is deplorable. The data is fairly easily reversible and contains everything, including drug use/STD etc.

If I was told it would be used solely for the NHS and to procure better outcomes for that I wouldn't care. For others to make a profit out of my data - well I'll be all right-wing on that and demand a fee.

I expect some news in a few years about how a massive amount of health data was left on a laptop on a train!

There are already a couple of big medical healthcare research databases that exist using exactly the same GP data which is anonymised (no name, DOB by year only, no address etc).

At the moment GP practices choose to sell their data to these database companies (CPRD and Epic/THIN) who then sell it on to researchers, mainly universities and the so like.

The issue with this is that your GP practice may well be signed up, selling your data and you don't even know it. At least with the NHS-wide system they're asking you.

It might be small consolation but at least with the central system the money will go back into the NHS, not straight into your GP's pocket.