NHS disregards patient requests to opt out of sharing medical records

Status
Not open for further replies.
Northerner

Northerner

Admin (Retired)
Relationship to Diabetes
Type 1
The NHS has disregarded tens of thousands of requests by patients to opt out of the health service’s system of sharing medical records. Officials have admitted that not sharing the data would affect the treatment patients received – such as cancer screening services.

Under guidelines released by the NHS last year, patients had been told they could, without affecting their care, “object to any information containing data that identifies you from leaving the secure environment … this includes information from all places you receive NHS care, such as hospitals”.

However in a letter to MPs, seen by the Guardian, Kingsley Manning, chief executive of the Health and Social Care Information Centre (HSCIC) which collects patient data, admits that “none of the objections registered by patients … have been enacted”.

http://www.theguardian.com/society/...rds-patients-requests-sharing-medical-records

:(
 
That's disgusting and a breach of confidentiality I would have thought.
 
Pumper_Sue said:
That's disgusting and a breach of confidentiality I would have thought.
Click to expand...


It was stupid of them to offer an opt out in the first place. Medical records have always been the property of the secretary of state for health. What they should have said is that to opt out of medical record sharing is only possible if you opt out of the NHS.

This isn't some dodgy company trying to monetise the data, it is being used to save lives. All this nambie pambie liberal data protection rubbish is adding a huge amount of complexity, cost and risk to any summary care records being implemented. The HSCIC is shirking responsibility and pushing this down to the CCG level multiplying the cost several times over.

The simple answer is a national repository with federated security and standard APIs available to store the data. With legislation in place that anyone found misusing medical data are sent to jail.

Sorry a bit of a rant but the more I work with healthcare systems and people the more frustrated I get 😡
 
I think it's a problem with trust - nobody trusts them to keep it safe (like leaving laptops/discs in pubs/on trains, and nobody trusts them not to sell the info on to insurance firms and the like. :(
 
Your mixing up summary care records and Care.data research data.

Summary care records are only available to healthcare professionals, via the N3 network.
 
My only objection to the whole thing is that whilst a doctor in A&E in Land's End or John o' Groats can get it - which is great esp in an emergency anyway and when you happen to be allergic to certain drugs etc - I still can't.

Why? It's MINE.

I happen to need to plot my BP at the moment and I can't except the most recent ones.

Love to know my A1c from way back for instance. It's of no interest generally or currently even in an emergency - but it is to me!

Wonder what's in there (if there is anything) that could plot my course, to not having complications after all this time. For instance!
 
Patient centric data is another kettle of fish.

A medical record is about you, it isn't actually yours. It might be useful for you to see an extract but I am yet to see a actual business case for this.

The NHS has a finite amount of money and diverting funds so that you can see historical medical data would have to prove that those funds couldn't be spent better else where.

How much would you pay for web access to this data? A national program would probably cost in excess of £100 million.

There is probably a case for you to share information which can be accessed by healthcare professionals, for example for type 2 diabetes sufferers sharing activity, diet and BG readings with their diabetic nurses.
 
Well Mac there have been cases where letters have been exchanged between consultants and GPs saying all sorts of wrong things about patients - from libellous remarks to totally incorrect medical info. Alright when you have the same GP for ages and he receives a letter about my foot in which the hospital says it might get better if I wasn't morbidly obese - my GP will probably know I certainly ain't, but it might not be anything as obvious. In which case, should he trust the rest of the latter and what if he then prescribes the medication suggested and it shouldn't be taken by anyone not that overweight? Cos GPs often don't bother to see you before doing the scrip!

Now we don't get copies of correspondence we don't know so how do we know the letters sent are a true picture of what actually was said or done?

But it was more the test results I was on about anyway. And yes, it should be shared, I don't mean I want to keep and be responsible for the whole caboodle.
 
Whenever my daughter goes for her 3-month check up at the hospital, the hospital doctor/consultant sends a letter to our GP detailing HbA1c result plus whatever we discussed at the meeting. They also send a copy of this letter to me. Don't all hospitals do this then?

I found out that my daughter was borderline anaemic from this letter - although within half an hour of receiving it I had someone from the GP surgery on the phone asking me to come in and pick up the prescription, so can't fault them there!
 
Sally71 said:
Whenever my daughter goes for her 3-month check up at the hospital, the hospital doctor/consultant sends a letter to our GP detailing HbA1c result plus whatever we discussed at the meeting. They also send a copy of this letter to me. Don't all hospitals do this then?
Click to expand...

No they don't - they stopped it in Coventry about 10 years ago. 9 out of 10 of these letters say Mr Bloggs is fine, see him again in X months - so really there's no point. However, when it actually says Change this or change that - I really wish they would.

None of the consultants - whatever disease etc you have, whatever you went to have investigated, even when it was ?mouth cancer, which turned out to only be an ulcer or something equally trivial - send the patient a copy. Wonder if they would, if the biopsy said it WAS cancer?

Who knows?
 
Status
Not open for further replies.
Back
Top