26 million “kept in the dark” as ministry prepares to seize their medical records
The author of an independent review of the NHS Summary Care Record (SCR) due to be published tomorrow, Thursday 17th June, has said that 88% of patients who had received letters about SCRs had either “thrown them away unread or could not remember receiving them” . Up to 26 million people could not know that they were losing their one chance to make an important privacy choice.
In the months immediately before the general election, the Department of Health spent £7.5 million ‘incentivising’ Primary Care Trusts to send nearly 30 million propaganda letters to the public informing them of ‘Changes to your health records’ . Those who do not respond to that letter by obtaining, completing, and delivering to their doctor a separate opt-out form are taken to have given irrevocable consent for their personal health details to be uploaded and shared through the centralised system. (Once viewed, one’s record would never be deleted.)
Despite the coalition’s agreement that:
“We will put patients in charge of making decisions about their care, including control of their health records”
new Health Minister Simon Burns recently announced in a buried Parliamentary answer  that the upload will go ahead.
In an attempt to influence a critical vote by GPs on withdrawing support for the SCR programme , Burns sent a letter to the BMA , promising yet another ‘review’ but offering no commitment to significant change.
Phil Booth, National Coordinator of NO2ID  said:
“Independent research indicates that 26 million people had no idea that one item of colourful junk mail was their only official warning of massive changes to
their families’ medical privacy. They have been kept in the dark, and have no real choice. They may not even find out until it is too late.
“This is not a mistake. It is deliberate abuse. Yet ministers who say they’ll put patients in control are happy to let it continue. Uploads must stop now.”
Notes for editors:
- In a panel debate on 15th June, Professor Trisha Greenhalgh is reported as saying: “…opt out rates were affected by the fact that, according to one piece
of research, 88% of patients who had received letters about SCRs had either thrown them away unread or could not remember receiving them. A 0.6% opt out
rate has to be interpreted in the light of those wider findings.” http://www.smarthealthcare.com/trisha-greenhalgh-summary-care-records-problematic-15jun10
Highlights of a draft of tomorrow’s confidential UCL report can be read here: http://www.computerweekly.com/blogs/tony_collins/2010/06/highlights-of-confidential-ucl.html
- See, e.g. ‘Race to kill off care record’, PULSE, 18th May 2010:http://www.pulsetoday.co.uk/story.asp?sectioncode=19&storycode=4126050&c=2
. And compare Connecting for Health statements that there have been no change to the “rate of activity” over SCRs –http://www.theregister.co.uk/2010/05/30/scr_review_call/ – with the graph at the bottom of its own page on ‘Key statistics for Summary Care Records’, which shows that around 27 million letters were sent from late January 2010 to the end of April 2010: http://www.connectingforhealth.nhs.uk/systemsandservices/scr/staff/aboutscr/benefits/scrkey
- See NO2ID’s press release, 6th June 2010: /2010-06/capitulation-to-nhs-bureaucrats-threatens-medical-privacy-of-millions/
- See ‘Government to review Summary Care Record rollout’, PULSE, 11th June 2010: http://www.pulsetoday.co.uk/story.asp?sectioncode=35&storycode=4126279&c=2
- Copy of Simon Burns’ letter to the head of the BMA and Chair of the GP Committee, read out to GPs just before a critical vote on withdrawing support for SCR on 11th June 2010: http://www.pulsetoday.co.uk/Journals/Medical/Pulse/2010_June_16/attachments/POC4_511760%20Dr%20Hamish%20Meldrum%20&%20Dr%20Laurence%20Buckman.pdf
- NO2ID is the UK-wide non-partisan campaign against ID cards and the database state. See http://www.no2id.net/dbstate for a list of ‘database state’ initiatives that NO2ID is actively opposing, and http://www.no2id.net/datasharing for how it all fits together.
In 2006, NO2ID helped launch the NHS Confidentiality campaign http://www.nhsconfidentiality.org, which won the right for patients to opt out of the Summary Care Record.
For an overview of why Summary Care Records represent a threat to medical confidentiality, individuals’ and the public health, see: http://www.no2id.net/downloads/SCR_bad_idea.pdf
For further information, or for immediate or future interview, please contact:
- Phil Booth (National Co-ordinator, email@example.com) on 07974 230 839
- Guy Herbert (General Secretary, firstname.lastname@example.org) on 07956 544 308
- Michael Parker (Press Officer, email@example.com) on 07773 376 166
Phil Booth will be in central London tomorrow, and available for interview on the launch of the UCL report.