Online opt-outs for care record Connecting for Health (CfH) has told NHS primary care trusts that patients do not need to appear in person to opt out of the Summary Care Record (SCR). The agency in charge of the NHS National Programme for IT has issued guidance that suggests it may be possible for patients to opt out through web forms. It made the point …
It should be opt-in, instead. They shouldn't be presuming consent like this, where you have to opt out if you disagree.
I also note the following:-
"last year the Department of Health said that patients would have to provide explicit consent for their details to be uploaded onto the system."
Not opting out is not "explicit consent". To count as "explicit consent", it would surely have to be opt-in instead. No matter how easy they make it to opt out, it's still not "explicit consent".
... by writing to my Doctor and telling her that I don't want my details uploaded on the NHS spine, but this suggests that I will now have to also write to the local hospital and opt out from *their* systems too.
The question then becomes will I have to opt out of any *other* systems as well?
What if I miss an opt out? Does this mean that, despite my best efforts, my details will still be available?
My consent should NOT be assumed, I should be ASKED for it.
Spot on.
It seems that, as with the National DNA Database, 'deletion' of records for those who opt out means that access to the data is modified rather than their records are actually deleted. (Clearly it has to be so if the audit trail is to be preserved.)
See, e.g., http://forum.no2id.net/viewtopic.php?t=26586
No Tom.
The Summary Care Record is - as we speak - being further populated with more clinical details from patient records.
CfH calls this "enrichment".
The Summary Care Record is becoming what CfH calls a "Detailed Summary Care Record".
And soon it will be - as more and more "enrichment" happens - your full medical record uploaded.
Summary Care Record becomes Detailed Care Record.
Neil
www.nhsdatabase.info
The need to opt out of as much of this as possible seems self evident, but unfortunately none of those campaigning for this seem capable of explaining, dispassionately, in a sentence or two:
a) What the database is (the spine, SCR, or whatever are all mumbo jumbo to me)
b) What data is going into the various bits
c) When our data is being (or has been, or will be?) entered
d) Who is entering the data
e) What we have to do about it and when in order to stop the process
I know medics are great at curing things, but communication isn't one of their strong points is it?
Anyone care to attempt a quick bullet-point guide to all this? I'm sure I'm not the only one utterly confused by the whole business. To keep it simple, don't bother telling me who can read the database. I'll assume that's everyone and his hound.
a) What the database is (the spine, SCR, or whatever are all mumbo jumbo to me)
The NHS Database (aka the "Spine" or "NCRS" or "National Care Record Service") is exactly that - a cental DoH-controlled database aiming to house the entire nation's medical records, both a summary (the "Summary Care Record" or SCR) and also the entire GP & Hospital records (the "Detailed Care Record" or DCR).
b) What data is going into the various bits
As Above
c) When our data is being (or has been, or will be?) entered
The "true" Detailed Care Record (that is, a joint hospital & GP record) isn't available yet, though in parts of esp North & East England the GP records are hosted on central servers and made available community-wide (I'm not sure of hospitals can see the data). See http://www.ehiprimarycare.com/comment_and_analysis/383/making_a_detailed_care_record_a_reality
The Summary Care Record - consisting initially of basic information such as main diagnoses, allergies, medication - is live in 6 "early adopter" PCTs, and shortly in a few more. About 200,000 summary care records have been created, but in those PCTs not all GP surgeries are participating (yet). The SCR is already being "enriched" with more and more data from GP records, even before nationwide rollout, becoming a "detailed" Summary Care Record.
d) Who is entering the data
GPs
e) What we have to do about it and when in order to stop the process
If your SCR has already been created you're too late. Whilst if you ask for your data to be deleted (and the PCTs do not advertise this) then your "working" record will be erased but the NHS Database will store/archive a copy of your records indefinitely for "medicolegal puposes", even if your SCR has never ever been accessed, seen or used in a clinical situation.
Otherwise, your GP surgery may have stated that they will not create SCRs without your explicit consent (e.g. http://www.abingdonsurgery.com/viewmessage.aspx?messageid=30 or http://www.oaklands.info ). In that case, you may not feel the need to do anything. Opting out as below will however ensure that your GP surgery cannot be coerced or forced into uploading your data.
That leaves opting out itself, which you can do in a number of ways:
1) Fill in a form (e.g. from http://www.thebigoptout.org ) and hand it in to your GP surgery, post it, fax it or (if they'll let you) email it.
2) Verbally advise your surgery that you wish to opt out. You do not need to make an appointment with your GP just to do this (they won't be impressed) but the next time that you do see your GP just ask to opt out. You could state your wish at reception (but they might not know what to do) or over the phone to your GP (if you're ringing him/her about something else) or by email to your GP (if he/she allows this).
You do not need to opt out in person if you don't want to. You do not need to give any reasons or justification for opting out. You do not need to "discuss the issue" with anyone.
Opting out simply means the addition of the read code "93C3" to your GP record, which will prevent any uploads to the Spine.
Opting out of the DCR remains uncertain as yet.
See http://www.nhsdatabase.info or http://www.thebigoptout.org for more info
@Neil
Many thanks for that potted summary, it's about the best run-down I've found so far. Now I think I'm starting to understand.
I just wish someone would stick an FAQ like this up somewhere more accessible.
@Adrian
I'm afraid I do blame the doctors, or at least their practices. It wouldn't cost my practice much to put together a sheet to inform me about what's happening, when they're entering my data and what their policy is on asking my permission, but they apparently can't be bothered.
The stuff that has made it on to the web isn't nearly clear enough. Take www.nhsdatabase.info for example - about 25 screenfulls of rant and you're not much wiser about what you need to do at the end. Perfect example of how not to design a web site.
If lack of clarity is the goal, it's a roaring success. However, I thought it was only the government that had that goal, not the GPs as well.
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