So, some of you may recall my rather negative comments on a UK national plan to make NHS medical records which are not even fully anonymised available to not only research universities, but also – totally unnecessary from a medical research standpoint – private industry in the pharma and insurance fields. This in spite of the fact that it takes just a few snippets of information combined with a medical sample to correctly trace the individual from whom the sample has been taken these days. Former posts are here, here and here. A very recent report in the Guardian is here.
Yesterday, the BBC reported that the plan – which unnecessarily jeopardizes the interests, integrity and liberty of masses of people, besides putting them at risk of being discriminated against for health reasons – has been delayed, since the NHS "has accepted the communications campaign, which gives people the chance to opt out, needs to be improved". That is, the "campaign" consisting of no information at all whatsoever, and which was made public only thanks to some vigilant bloggers – especially MedConfidential. The "campaign" consisting of the NHS apparently deliberately making its very best to hide from the public that they have the unconditional right to opt out of the whole scheme and how they may go about claiming that right. No wonder that the lead-heavy players in the field such as "The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all voiced concerns".
The plan is to devise an information campaign, which – lets hope – actually informs people about their right and gives them as easy access to the form to fill out to opt out as they facilitate the sellout of patient medical details and records. By August it will all be ready to roll-out the system, the responsible ones promise. I believe it when I see it.
Just in case they don't: here's once again the link to all you need to opt out. If I lived in the UK, I certainly would fill out and hand it in immediately! The inconsiderate hurry, carelessness and obvious money-hunger of the forces having pushed this setup into place inspire everything but confidence and trust. I'm sure there will be more to come eventually.