Patient data quandary

Published: 9:01 AM March 14, 2008

Updated: 1:56 AM February 23, 2021

THIS sort of data sharing ( Hunts doctor excluded from work for five years, December 27) has been going on for years with the approval of doctors. It was made legal only in 2001 with the introduction of the Health and Social Care Act which included Secti

THIS sort of data sharing ("Hunts doctor excluded from work for five years," December 27) has been going on for years with the approval of doctors. It was made legal only in 2001 with the introduction of the Health and Social Care Act which included Section 60.

Identifiable data can be released without patient consent with approval from the Patient Information Advisory Group (PIAG). The group has approved a whole load of medical data releases, including data from sexual health clinics and has pointed out that it would be acceptable for identifiable data about terminally ill patients to be released without patient consent or knowledge.

The group's full list can be found on its web site www.advisorybodies.doh.gov.uk/piag/register.htm.

It is not known how many patients have been affected, as PIAG does not collect this information. That means it might be a few hundred thousand, but then again it could be in the millions. With identifiable medical data to be shared with the Secondary Use Service (a service run by BT which refuses to say how many of its staff will have access to identifiable data) and with it being possible to access this data without patient/GP knowledge, things are set to become worse, especially as researchers are demanding access to the new database - they have been claiming for years that they have the right to access any medical record they wish without patient consent or knowledge.

There is also a law that would see health professionals fined up to £5,000 if they refuse to share data if the patient has said no (S60 can be bypassed by patients if they say they do not want data shared under this section, but they have to make sure this is marked in their files). Information on that law can be found at www.opsi.gov.uk/si/si2002/20021438.htm. Part of it states: "Any person who does not comply with a requirement imposed on him under regulation 2(4) or (5), 3(4) or (5) or 7 may be subject to a civil penalty of not exceeding £5,000."

I am sure there is someone else that allows identifiable data to be released, but I can't find the link that used to be on the PIAG site.