Secondary use of data could be blocked nationally if the NHS fails to ensure patient data is used with proper governance, the British Computer Society’s Primary Health Care Specialist Group has warned.
Ewan Davis, who has led the work for the PHCSG, told this week’s Primary Health Info conference that the PHCSG has been investigating use of secondary data following concerns from members about what primary care trusts are doing or planning to do with patient data for secondary purposes.
He told the meeting: “We have real concern that if we don’t apply best practice then one of these days we are going to read about it in the Daily Mail and the government is going to respond by shutting it down.”
Davis said the PHCSG supported secondary uses of data and believed its use for purposes such as risk stratification was essential. However, it also believed issues of patient consent and privacy had to be properly addressed or there would be a backlash from patients.
He said the PHCSG’s current position was that patients had to be adequately informed, through practice websites, leaflets and the waiting room, that their data could be used for secondary purposes and given the right to opt-out.
He added: “Use of data for secondary purposes is a privilege and not a right and I take great exception to some people in the clinical research community who think patients should have no choice.”
Davis argued against extracting “big data buckets” for secondary uses. He said the least information for the purpose necessary from the least amount of people should be extracted for the least amount of time.
He also said the NHS needed to ensure that any information used was adequately anonymised by use of the best privacy enhancing technologies.
He added: “I go cold when I read about anonymised data being published to the web for all to see. People often don’t realise how little information you need to be able to identify someone.”
Davis also claimed that PCTs were more likely to take a more relaxed stance on information governance than businesses focused on secondary uses of data.
He added: “PCTs are much more willing to be cavalier about this than the commercial companies who need to protect their reputations.
Davis said the PHCSG is still working on its paper on use of secondary data, the latest version of which is on its website, and that the group is also contributing to work on the topic by the health section of the British Computer Society.