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The government wants academics and businesses to be granted access to the medical records of almost every man, woman and child in England. Almost all visits by patients to hospitals and GPs will be identifiable in the dataset, which will be stored in the NHS’s ‘Secondary Uses Services’ database. Companies would access the database to get details for medical research to improve public health, officials say, though it would also be used to sell products to the NHS. Patients can have their say on what “additional” purposes their medical data should be used for “other than direct care”, in a consultation which opened without publicity last week. Input from a consultation on the summary care records system, which is part of SUS, has convinced officials they should not be allowed to view anyone’s SCR without asking them first. Until an announcement last week, patients had to contact their GP to opt-out of the database if they did not want their records included, with failure to do so resulting in inclusion. But this victory for privacy campaigners has been turned pyrrhic by the disclosure that the NHS is set to share medical records with academics and businesses. The Big Opt Out said it found out the NHS “has entered into financial arrangements with private companies and academic organisations to give your SUS medical records to them.” Once the care records system has gone live, (it is currently running four years late) the group said pharmacist and GP records will also be sent to the SUS database for third-party use. The Department of Health has said most records would be anonymous but admitted to a Sunday newspaper that identifiable data, which could include names, might be sent if it was deemed useful. “Patient identifiable data is used mostly to deliver care and treatment to patients,” the NHS said in a glossary of terms, addressing parties to the consultation. “The advent of new technology with the NHS Care Records Service offers new opportunities, with the electronic collection of clinical and patient data.” Helen Wilkinson, an ex-NHS manager who runs The Big Opt Out, claimed patients’ “demographic details were also being given to [pollster] MORI,” including names, addresses, and ex-directory phone numbers. The agreement, which she said was entered into by the Information Centre for Health & Social Care, “is being done without patient consent” so the firm can contact patients with questionnaires. Despite rebuttals from the NHS that “a patient refusing consent for the NHS to use their records is not being denied care” she believes that objectors to the department “selling their SUS medical records… will be denied access to medical care.” Although, then, the consequences of not being included on the SUS database seem unclear, Connecting for Health yesterday assured the Sunday Telegraph that patients could opt-out. The agency’s chief operating officer, Professor Michael Thick, told the paper that patients could be removed from the SUS if they made an application under the Data Protection Act. Under the SUS’s existing framework, facilities will be improved so users can track the progress of data submissions, which users will download within 48 hours of transmission by April. SUS users will get a “data deletion facility” so they can remove duplicate records submitted by one provider “without disruption of processing of data” sent by other providers. All providers of NHS Care will be submitting data to SUS, where it ‘must be processed reliably and quickly,’ allowing NHS commissioners to access the details through the database. The Information Centre has said: “This IT infrastructure, based in SUS, to track patients from referral to treatment is critical to delivery of the 18-week target and relies on providers submitting referral-to-treatment data for all activities.” Sep 22, 2008 Email this article Printer friendly page Previous Page
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