– Elizabeth Dove’s visit to her GP for depression may be an open secret on the Isle of Wight, since 966 council staff have access to her medical data. 966 is about 1% of the adult population of the island.
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– GPs across England routinely share mental health data with PCTs which share it with thousands of local council staff.
– GP Paul Cundy says the case of Elizabeth Dove is an ominous warning for the sharing of Summary Care Records data under “implied consent”.
In 2008 Elizabeth Dove (a pseudonym) saw her GP to ask what could be done about her depression.
Some time later Dove had a dispute with her local council, a matter entirely unrelated to her health.
Pursuing her complaint to the Isle of Wight council, she submitted a request under the Data Protection Act to be sent all the information the authority held on her.
To her dismay, she received sensitive data from her GP health records. It came from officials at the local council’s housing department – with whom she had the dispute.
It turns out that her health data was held on a joint council and primary care trust system “Swift”.
She hadn’t consented to her health records being shared with the local council.
Dove said in an email to me:
“I feel very let down and betrayed by the NHS and my local council. I feel particularly that my trust has been broken by the NHS regarding the sharing of my medical information . Local authorities and public statutory organsisations seem insensitive to a person’s basic human rights to personal privacy.”
My article on this blog about Elizabeth Dove was picked up by investigative journalist Donal MacIntyre who hosts a programme on BBC Radio 5 live.
When Bob Howard, who works on the Donal MacIntyre programme, asked the Isle of Wight PCT and the IW Council for a comment on Elizabeth Dove’s concerns, he learned that 966 council staff have access to the “Swift” system.
This was the joint statement issued by the Isleof Wight PCT and the IWCouncil:
“The SWIFT system is used jointly bythe Isle of Wight Council and the Isle of Wight NHS PCT to support theprovision of fully integrated mental health services
“Theprincipal reason why data is, under strict control, shared between theNHS and the Council is to allow those organisations to offer the mostappropriate treatment or services to people in need.
“We wouldbe open to criticism if care offered by one organisation conflicted withthat being given by the other.
“This data sharing is practisedthroughout the country in accordance with strict controls andsafeguards.
“Only staff professionally involved with providingcare are authorised to access the information and access is audited tobe sure each user is using the system correctly. Approved users areauthorised to view only the files relevant to the cases they are workingon.
“All users are acutely aware that inappropriate use ofSWIFT is a very serious breach of confidentiality under numerous piecesof legislation and inappropriate use of SWIFT will result indisciplinary action.
“There are 966 (both full and part timestaff) people authorised to access the system under these stringentcontrols.
“Since the implementation of SWIFT, procedures havebeen put in place to ensure service users are aware of data sharing.
“Lastyear, the council completed an exercise where all Community Serviceskey workers received leaflets and consent forms for each of theirservice users.
“If a service user does not wish information tobe held on the Swift system there is a process to follow and in veryexceptional circumstances the system will not be used. Service userdata is not used during training.”
During hisprogramme last weekend MacIntyre interviewed me about the Dove case.MacIntyre also spoke to GP PaulCundy, a member of the BMA’s GP IT committee.
I told theprogramme that the council’s data security procedures are of no comfortto Dove when dozens of council staff who have seen her records leave theauthority as part of normal staff turnover.
What if Dove is indispute with a neighbour who used to work for council? That neighbourcould bring up the fact that Dove has had mental health problems andthreaten to spread the word.
Paul Cundy said that when a GPshared information with another doctor by letter, the GP woulddiscretely extract only relevant information. With electronic recordsit’s a “completely different arrangement”.
He said: “Databasesdistribute information about you even when care is not being delivered.”
Headded that the BMA’s view is that a profoundly different arrangementfor sharing information, via national or regional databases, needs aprofoundly different arrangement for consent. “In the past there wasimplied consent and trust between the doctor and the patient.
“Thereshould still be trust but people cannot reasonably assume that impliedconsent is enough. If now, when you see your GP, that information couldend up on the screens of 1,000 local council employees, instead ofimplied consent patients should give their explicit consent. They shouldbe asked.”
Donal Macintyre: “So do you think patients will winout in the end?”
Cundy: “I am afraid I am not certain aboutthat. Governments are big, powerful organisations. They are rolling outthe Summary Care Records despite an apparent agreement not to do that.I’m afraid the greater losers may be patients.”
Patientdismay as her medical data is shared with council – IT ProjectsBlog
Whendata sharing ruins lives – IT Projects Blog