Patients gain right to scrub e-records from NHS database
Forceps, scalpel, data deletion tool...
NHS patients will be given the ability to scrub electronic records of their treatments and medical conditions from a proposed national medical database.
The concession to patient privacy and data protection follows negotiations between health service officials and data protection watchdogs at the Information Commissioner's Office (ICO), The Guardian reports. Patients - who already had the right to opt out of the scheme - now have the right to have their medical records deleted instead of simply masked once they are put onto the system.
Health officials have previously fended off security concerns about data transmitted over the NHS extranet, which is called the Spine. They also claimed as recently as last month that the cost of running a system for deleting individual summary care records (SCRs) would be too expensive, instead offering to put in place a system to hide records from general access while still retaining them on the database.
The summary care records are designed to provide NHS doctors and nurses with ready access to care records irrespective of whether a patient has visited a particular hospital or facility before. Details will include past treatments, notes of possible allergies, drugs being taken and medical conditions already being treated. The information would be particularly useful in cases where a patient is in no state to answer questions, or is responsive but unable to recall details of their medical history.
The same SCRs could be used to indicate a dying patient's preference not be be resuscitated in cases where they experience a heart attack, for example. Tens of thousands of these summary records have already been established during pilot schemes in Bolton and Bury.
Dr Gillian Braunold, a medical director of the programme, told The Guardian that although most people see the benefits of the scheme, a "significant minority" want no part in it. The change in deletion policy means that "the deletion option is there if [individuals] are not happy they can choose to have [their SCR] deleted physically".
One important exception remains, however. In cases where a patient's SCR file has already been used, then it would be archived rather than deleted for legal reasons, Dr Braunold explained.
Some GPs, as well as privacy activists, oppose the scheme. One of the main concerns is that data held on the system will be accessible to all authorised users instead of only clinical staff treating a particular patient.
The records system is run by NHS agency Connecting for Health (CfH), who people would need to contact with a request to have their medical records deleted. However its unclear what forms and red tape might be involved. Suspicion also remains that the simple act of a GP accessing the records, for example, might be used as a bureaucratic excuse to refuse deletion.
An ICO spokeswoman confirmed that deletion of medical records would now be possible following talks between the watchdog and managers from the CfH.
In a statement, the ICO explained the thinking behind the procedure:
People want the assurance that they can restrict who can access their personal details in NHS electronic records.
We met recently with Connecting for Health (CfH) to discuss the permanent deletion of summary care records once a patient requests their summary record no longer appears on the database.
We are pleased that as a result of these discussions CfH have found a way to ensure that these records are permanently removed from the database when appropriate and we are continuing to talk to them about how this is put into practice.
Information can be removed by contacting CfH and making a request, the ICO spokeswoman added. ®
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.....
RE:If you can believe them
As things stand NO historic data has been electronically gathered as part of the national programme. What the person you asked meant was put in a box and stored in a warehouse off site as has been a necessity for years as paper records take up a heck of a lot of space.
Nice paranoia though.