9 posts • joined 20 Mar 2009
Your SCR may not even have been accessed.
"In the event that a summary care record has been accessed, or should have been accessed, as part of someone’s healthcare, the record needs to be kept"
So if you presented to A&E and refused to let someone look at your SCR (perhaps because all that was wrong with you was a simple laceration) then thereafter you would not be able to get your SCR deleted.
read the small print.
Let's be clear
This is about being able to delete your Summary Care Record only.
Not your GP-held records and not your hospital-held records.
I sought advice (from the DoH then the ICO) on whether patients who:
* discover that their data has been uploaded to the SCR (without their knowledge or understanding) and don't want it there, or
* decide that they really don't want their data stored in this way (say after the next great data loss), or
* decide that there are better ways of sharing their information, or
* decide that what they signed up to (by not opting out of the SCR) is turning out not to be as they thought (expanding access, secondary uses of information, linking to other databases etc)
could get their uploaded data - their SCR - deleted. Their choice.
The DoH said no, as was widely reported.
So I wrote to the ICO as I could not see how this was compatible with data protection laws.
This prompted meetings between CfH and the ICO
and it appears that this is the outcome.
If you have a SCR and you are happy with it, fine.
If you don't, and you don't want one, then opt out now.
But I bet it won't be easy to get your SCR deleted.
I suspect patients will have to write to CfH, provide multiple proofs of ID (just like the Hampshire Health Record tries to insist on), may even have to attend in person somewhere, may need to "discuss it first" with someone.....
IM&T plan for 2009/10 here:
At least four hospitals intend to implement CSC’s Lorenzo.
I think he was only referring to those (very few) who really needed or wanted to make their information available, and then giving them total control over the data.
Of course, there are far better ways of imparting info to A&E docs if - for example - you have a severe allergy say to penicillin (and by severe I mean anaphylactic, not just an itchy rash sometimes).
Google Health is just one concept, and it will clearly not appeal to many. However, you control what is available and if all that's on your "Google" record is "allergy to PenV" then you might be OK with that. HealthVault isn't available in this country as yet.
For that matter, most households have broadband and most ISPs provide some free web hosting. You could set up a password protected area on your own web site, with your (very limited) critical medical info on it. Might be preferable to Google if you feel you absolutely have to do something.
Best to discuss this with your GP though. You have to ask yourself why you are considering this if your GP hasn't already raised the subject with you.....
There appears to be some confusion here. The Summary Care Record is the data uploaded from GP surgeries. It has nothing whatsoever to do with the hospital installations such as Cerner Milleniium, Lorenzo etc.
The Summary Care Record is hardly advanced. Just 6 PCTs are involved, and of those (as at 1st April 2009) only 5 have uploaded any data at all. Only 200,000 records have been uploaded after >2 years of this project and then with multiple problems. The number if GP surgeries involved is tiny.
Of the handful of "fast follower" PCTs planning to start uploading, we are talking about 1 or 2 surgeries per PCT.
Hampshire PCT has no intention of uploading to the SCR until at least 2010. Others will be the same.
The SCR could be cancelled in an instant without anyone noticing.
I have asked SWEssex PCT why they removed it.
They were "asked by CfH to change this wording".
"So you have to opt out now, or always be included and never be able to opt out?"
Pray your GP doesn't "accidentally" upload your records, cause he/she won't be able to put it right.
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
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
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
Summary Care Record
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.
Prevented but not deleted
"this can be easily prevented"
don't be fooled.
you can never get it completely deleted.
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