The NHS database opt out decoy

Anyone with an interest in patient privacy in the UK should take the time to read The NHS Database: Lord Warner’s opt out decoy by Dr Paul Thornton MPH, FRCGP. Dr Thornton dissects the complex mess that is the NHS programme for IT and some of the driving agendas in a clinical but accessible way (sadly, though, at 12 pages of A4 probably beyond the attention span of the average New Labour minister).

When former health minister Lord Warner gave a public assurance just before Christmas that people would be able to opt out of having their patient records recorded on the new insecure national database, it was right after he had accepted the recommendations of a ministerial taskforce which had stated exactly the opposite i.e. everyone is expected to have their health details recorded on the national database.

"All that is being offered by the ministerial working party is an “opt out” from the “summary care record”. This limited opt out is important because all information in the summary care record will otherwise be accessible to all NHS staff nationally5. Initially the summary care record will include only current medications, allergies to medication and adverse reactions. This is sufficient information to imply highly sensitive diagnoses. If you know the treatment you know the disease. It is intended that the summary care record will include even more data as time passes...

CfH intend that all clinical, psychological and social information will be recorded by professionals in a “Detailed Care Record”, a subset database of the entire scheme. The information will be stored on centralised computers that are remote from the unit treating the patient..

At the planning stages of the project, Connecting for Health reassured that patient information would be protected from widespread inappropriate sharing because software would be used to hide sensitive information that patients did not want revealed, even to other health professionals. The proposals were metaphorically dubbed “sealed envelopes”. These proposals were described even by CfH as necessary to meet the project’s legal obligations on privacy and confidentiality. After substantial delay and failure to produce working software in this regard, CfH documents have just been updated9. It is confirmed that all the inadequacies10 in the proposals persist.

· The software is not yet written or tested
· It will not be available until long after the database is up and running so that
detailed care records will be unprotected
· It will not protect information that is stored in scanned images of historical documents.
· The patient controls can be over ridden
· The sealed envelopes will be ignored in respect of information transferred to
the Secondary Uses Service

Through a further safe guard, “Role based access”, it is intended that staff will only be able to access information that is justified by their job purpose, as indicated when they log on using their chip and pin card... It is just not that simple. The proposal is untested. Already, a Warwickshire hospital A&E department has abandoned the use of chip and pin cards by individual users because they were unable to log on and off quickly enough.11 Warwickshire primary care trust is enabling administrative staff who work at the PCT to be issued with Chip and Pin cards that would misrepresent these staff as employees of the local General Practitioners, thereby allowing access to sensitive patient information"

He goes on to explain succinctly plans for secondary use (such as research) of personally identifiable patient information which will be accessible by NHS staff, universities, the civil service, the police, social services and the pharmaceutical industry. He believes that the independence of the Patient Information Advisory Group (PIAG), charged with advising the Secretary of State on lawful uses of patient information, is compromised because several members of the group are leading participants in the design of the national database. He even quotes minutes of a group meeting where uses of patient data that would be constrained by existing legislation were considered and the group concluded that “consideration should be given to how either the class regulations or primary legislation might be reframed to encompass such uses.”

The current Health Minister, Lord Hunt, is on record as saying:

“With the best of intentions, the NHS has had a tradition for paternalism where much of what is done in the name of science or research relies on the implied consent of patients, but that implied consent has been pushed too far. We saw that example at Alder Hey. There the issue was human organ retention. We see it in many places where confidential patient information is currently used. The most important lesson to be learnt from Alder Hey is that patients' trust will be lost if we fail to forge new relationships based on informed consent.”

The current state of and plans for the NHS programme for IT undermine that principle of patient consent, sometimes for the best of intentions e.g. to facilitate medical research. But medical research is not impeded if the patient data is anonymized. Through a combination of good intentions, political expediency, Machiavellian media manipulation, mulitple conflicting agendas and the sheer complex mess that constitutes the NHS we are going down a path that could do significant damage to patient care and personal privacy. Of course computers can augment the work of the NHS but for now the decision makers need to get right back to clarifying the purpose of national NHS IT programme and completely overhauling the imlpementation.

For those interested in knowing a little more about the NHS IT plans I recommend, as does Dr Thornton, the BCS report on same released just before Christmas. Sadly it didn't get the attention it deserved at the time such was the success of Lord Warner's economical-with- the- truth PR sales pitch that the government had taken on board the concerns of critics and adjusted their plans accordingly.

Thanks to Glyn at ORG for the pointer to Dr Thornton's paper.

Update from today's Guardian: First test launched of NHS's controversial 'Spine' database