“Patient information form and patient consent form,” often translated into English as “informed consent” which sounds like a single document rather than the German pair of patient information materials + patient’s consent statement [Einwilligungserklärung].
Medical ethics require patients agreeing to participate in pharmaceutical testing to be adequately informed about the drug or device trial and associated risks and benefits, and then to give their written consent to participate in the trial so described. Translators of these forms must take extra pains to render them in clear language because the people reading them might not be in the best of health.
As recovering law student and standup comedian Susan Calman said, “there’s no consent without informed consent!”
General practitioners in the U.K. are concerned, she said, that people there have not been sufficiently informed about the National Health Service’s plans to put physicians’ records and hospitals’ records on a “superserver,” central database, to which more than just health professionals will have access. The patient data will be at least partially anonymized, proponents said. It’s unclear what the rules will be for selling or sharing patients’ data with third parties.
People not worried about data privacy might nevertheless be concerned about any unclarity in David Cameron’s government’s communications about how it will share or not share the U.K.’s digitized medical records because his coalition’s recent privatization projects have been accused of selling at too-low prices. Protection adequacy is also in question now since the Snowden revelations.
Update on 24 Feb 2014: Despite reassurances from the British agency currently in charge of patient medical records in the U.K., the Health and Social Care Information Centre, that “data held in the new giant database would never be used for insurance purposes, stating that any such actions would represent a criminal offence,” the Telegraph.co.uk has discovered that David Cameron’s government already sold the N.H.S. medical records, to an actuarial firm that advises “insurers and actuaries on how to ‘refine’ critical illness cover,” in 2012, for two thousand pounds.
The contract to extract and anonymize patient data from individual physicians’ office records for the new central database has been awarded to a company called Atos. Atos has asked for early release from its previous government contract because of death threats to its employees.
Update on 03 Mar 2014, from the Guardian:
“A prominent Tory MP on the powerful health select committee has questioned how the entire NHS hospital patient database for England was handed over to management consultants who uploaded it to Google servers based outside the UK.”
This database contained H.E.S., hospital episode statistics, and these management consultants called themselves PA Consulting. In addition to Google, anyone tapping communications lines leading to Google, actuaries and consultants, N.H.S. patient records might have already been obtained by or available to “pharmaceutical firms, government departments [including police] and private health providers.”
(Pot YENT en in foh mah tsee own oont pot YENT en eye n vill ee goong.)