Patient privacy campaign medConfidential [1] today strongly criticised the launch of a media campaign by 42 research organisations and medical charities [2] promoting NHS England’s new care.data scheme [3].

The advertising campaign, funded by organisations some of which have lobbied to access information held in patients’ medical records [4], uses blatant appeal to emotion to encourage people not to opt out of having confidential medical details from their GP record uploaded to central servers in identifiable form.

Information provided on the campaign website [5] focuses on research uses but makes only passing mention of other ‘secondary uses’ to which people’s medical information may be put and the non-medical, non-research organisations outside the NHS which will also be given access [6].

Evidence consistently shows that while many may be quite happy for their personal health information to be used for medical research with their permission, around a quarter of people are not [7] – with concerns ranging from disclosure and misuse to fraud, discrimination, breaching rights, commercial use, inaccuracy and private information becoming known to friends, family or acquaintances.

Phil Booth, coordinator of medConfidential, said:

“Promoting a scheme that is based on dodgy ‘presumed’ consent is bad enough, but trying to convince people not to protect their family’s medical confidentiality using such overtly manipulative imagery borders on unethical. The money would have been better spent building ways for people to express a positive choice to participate in research.

“The Wellcome Trust’s and MRC’s own studies show that around a quarter of the population don’t want their sensitive health details being shared, even for medical research. And this is their absolute right. So if opt out rates turn out significantly lower than 25% this Spring, it won’t be an indication of success. It’ll point more to a massive whitewash.”

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Notes for editors

1) medConfidential campaigns for patient privacy, confidentiality and consent in health and social care. It was founded in January 2013 in response to the imminent and serious threat posed by radical changes in the way patient health information is to be collected and passed on. medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals to defend and enhance confidentiality across health and social care: www.medconfidential.org

2) The campaign website is at www.patientrecords.org.uk

3) The care.data scheme will begin uploading confidential medical information in identifiable form from the GP record of every man, woman and child in England from Spring 2014. For more information on the scheme, see http://care-data.info – written by Hampshire GP, Dr Neil Bhatia, this site provides a more comprehensive description than is provided by NHS England at www.nhs.uk/caredata

4) From ‘care.data Addendum papers’, September 2013:

“Although the care.data Customer Requirement Summary [March 2013] makes reference to data for research purposes, it was subsequently clarified by NHS England, and confirmed to the GPES Independent Advisory Group, that the research community was not included at that time.

In the meantime, NHS England and the HSCIC have been approached by a number of organisations that use the HSCIC’s Hospital Episode Statistics (HES) managed extract service to express their disappointment that the original submission only requested access to the data for commissioners. These organisations include Diabetes UK, the Nuffield Trust, Cancer Research UK, University Hospitals Birmingham NHS Foundation Trust, Caspe Healthcare Knowledge Systems (CHKS), the National Cancer Registration Service, and Arthritis Research UK.

Therefore, this addendum requests that access now be granted by the HSCIC to a wider audience, including researchers, on a case by case basis.”

5) The campaign website unfortunately repeats the assertion, also made in the junk mail leaflet currently being sent out by NHS England that “you will need to speak to your GP” to opt out. This is potentially misleading. Patients do not have to speak with their GP and they most certainly do not need to book an appointment. If they are concerned in any way for the confidentiality of their and their family’s medical records, people can simply write to their doctor or drop a form such as the one provided here: www.medconfidential.org/how-to-opt-out/ into their GP practice, instructing their doctor to opt them out.

4) From ‘care.data Addendum papers’, September 2013:

“Examples of additional customer organisations may include:
• Universities and other academic research organisations
• Commercial companies
• Think-tanks
• Medical charities
• Medical Royal Colleges
• Information intermediaries”

And NHS England has already, e.g. received Section 251 exemption to pass identifiable patient data around a range of bodies at national and local level, for commissioning and other purposes not to do with patients’ medical care.

5) Studies such as the Wellcome Trust Monitor, 2009 & 2012 – see table on p119 of Wave 1 study: http://www.wellcome.ac.uk/stellent/groups/corporatesite/@msh_grants/documents/web_document/wtp040713.pdf which shows that 28% of people are concerned (and a further 10% may be concerned) about allowing access to their medical records for medical research.

This figure is reflected in MRC’s ‘The Use of Personal Health Information in Medical Research’ report, 2007:

“The most common reason for being unlikely or certain not to allow personal health information to be used for medical research purposes is concern over privacy (28%). Other common concerns focus on potential abuse and loss of control. Around one in ten are anxious about such information ‘falling into the wrong hands’ (13%), and similarly over the perception that individuals can not control who uses their information (13%), or for what purpose (12%).”

– page 8, http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC003810, see also pie chart on page 40 which indicates that 25% are unlikely to allow their personal health information to be used for the purposes of medical research. Table on page 38 lists perceived ‘Disadvantages of Collecting Personal Health Information’.

For further information or for immediate or future interview, please contact Phil Booth, coordinator of medConfidential, on 07974 230 839 or phil@medconfidential.org

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