Care.data – 40 reasons to be wary of the omnishambles

  1. I care about the confidentiality of my medical records.
  2. I am not happy with being opted-in to something I do not completely understand.
  3. Informed consent is crucial and implicit consent is nonsense.
  4. I am suspicious of state sanctioned surveillance.
  5. Care.data is a data grab on the grandest scale.
  6. Whilst this data grab may be legal, it is only legal because of a clause buried deep in the Health and Social Act 2012 which allows NHS England to bypass the Data Protection Act and extract the data from medical records without patient consent. GP practices must still process the data fairly and lawfully with regard to the Data Protection Act. See the Information Commissioners Office for more info.
  7. NHS England have not made enough effort to inform the public about care.data.
  8. Early in 2014 NHS England sent a leaflet to all households telling everyone they had a choice about care.data, but the leaflet did not contain an opt-out form.
  9. You may not have seen this leaflet because it was sent alongside junk mail rather than in an addressed envelope at the beginning of 2014. If you haven’t seen it (less than a third of adults have according to this survey)  here it is.
  10. Care.data (despite the name) is NOT about directly improving the quality of your medical care.
  11. Summary Care Records (another NHS England data sharing scheme) are however. Summary Care Records are designed to improve information sharing between medical staff in the interest of the patient. For more info see – www.nhscarerecords.nhs.uk.
  12. I am concerned that my will medical records will NOT be anonymised when they are uploaded from the GP surgery to the Health Social Care Information Centre (HSCIC). NHS number, date of birth, gender and postcode will ALL remain attached to your records.
  13. NHS England themselves admit in the scheme’s Privacy Impact Assessment (PIA) that care.data puts patient confidence in confidentiality at risk  –

    extract from NHS England's care.data Privacy Impact Assesment (p.6)

    extract from NHS England’s care.data Privacy Impact Assessment (p.6)

  14. Identifiable data (NHS number, gender, sex, ethnicity, post code) from your medical records will be pseudonymised meaning it will be encoded but this process will not occur until after the data has been uploaded by your GP to the HSCIC.
  15. The free text from your medical records will not be recorded. This is largely irrelevant as doctors have Read codes for EVERYTHING.
  16. I don’t want my medical records on a massive database run by ATOS. Terrifying.
  17. I don’t want the police reading my medical records. See reports in The Guardian 6/02/2014 ‘Police will have “back door” access to health records despite opt out says MP and 10/08/2014 ‘Police want right to see medical records without consent’ 
  18. I don’t want my medical records sold to private companies. Your medical records are for sale. Price list available here.  
  19. I don’t want insurance companies accessing my medical records. The HSCIC admits it does not have full control over who the end users are of care.data. See Oral evidence to Health Select Committee in Handling of NHS patient data inquiry, 8/4/14:http://data.parliament.uk/writtenevidence/WrittenEvidence.svc/EvidenceHtml/841
    Q272 Barbara Keeley MP: For all those 249 organisations with a commercial reuse licence,can we know who all the end users of our data are? Kingsley Manning, Chair HSCIC: No, because they are using it and putting it into additional services.
  20. Would you be comfortable if your medical records were linked with other government data sets? DWP? HMRC? Home Office? Big data has big (and scary) implications for governmentality (the way in which we are governed and, ultimately, controlled as citizens). See Open Right’s Group’s update ‘How will the government share your data?’ 29/05/2014
  21. I don’t want to play a part in the marketisation of the NHS. Your data has a value!
  22. I don’t want my medical records to be stored on a database indefinitely…
  23. and I don’t want my GP to upload my historical medical records either! The “long term vision” is to extract “historic data” also. See NHS England care.data Privacy Impact Assessment page 7.
  24. I understand that all this data would be very useful for medical researchers. A coalition of medical research organisations have made this flowchart about how your information will be collected and used. BUT research ethics dictate that if I’m going to be involved in a study, I need to give informed consent.
  25. Ben Goldacre (of Bad Science fame) is embarrassed that he ever pledged support for the project. He wrote in support of the project in The Guardian 21.02.2014The NHS plan to share our medical data can save lives – but must be done right’ but a week later revised his position – ‘Care.data is in chaos. It breaks my heart
  26. I’m not sure about Tim Kelsey’s credentials. National Director for Patients and Information (the guy pushing the care.data agenda) is a journalist not a clinician. He is the founder of Dr.Foster Intelligence  ‘the leading provider of healthcare information and benchmarking solutions in England – and increasingly, worldwide.’ Lets just say Tim knows a thing or two about the commercial value of data.
  27. Dr.Foster’s tagline is ‘Better Information, Better Health.’ The care.data tagline is ‘Better information means better care.’ A lack of imagination or decidedly suspicious?
  28. I don’t believe that TripAdvisor for hospitals will improve the effectiveness, safety or quality of care. The nature of choice in terms of choosing a hospital as opposed to a holiday are fundamentally different. Whilst I may choose to go on holiday, nobody chooses to be ill. If you make ill-informed choices when booking a hotel you end up in a smelly backstreet. Mis-choose your hospital and you risk contracting MRSA or c difficile; risk not returning from your ‘trip.’
  29. Even the founder of Tesco clubcard is worried about care.data and that is quite something.
  30. Civil liberties and anti-surveillance organisations like Big Brother Watch are campaigning against care.data… 
  31. and Open Rights Group have taken a balanced look at the pros and cons here
  32. But Professor Sir John Savill head of the Medical Research Council tried to dismiss organisations and members of the public who are worried about care.data by calling them “consent fetishists”. C’mon, I’d like to think consent was the cornerstone of medical practice. This does nothing to allay our worries *increasingly worried face*.
  33. NHS England in their May 2014 Information Governance newsletter 14 published this image (see below) of their ‘Information Governance Universe’. I kid you not (see page 5). Medconfidential were quick to point out that the National Information Governance Board does not even exist. This infographic(?!) is not only aesthetically displeasing but inaccurate to boot. Do you feel like trusting people who can’t find a high definition picture of outer space on the internet with your medical records?

    NHS England's 'Information Governance Universe'

    NHS England’s ‘Information Governance Universe’

  34. OPTING OUT IS EASY www.medconfidential.org has opt-out forms and more information about the campaign against care.data
  35. And thanks to Medconfidential care.data was stalled for 6 months as of February 2014 to smooth out some confidentiality issues and make sure the opt out is really an opt out.
  36. As part of this ‘smoothing out’ process a care.data Advisory Group has been set up. Gems from the minutes include: * “There was a discussion about getting back to the requirements of and benefits to the customer (meaning the citizen) rather than focusing on what data the NHS believes it needs” (from meeting 1) * Regarding communications and engagement activity “the narrative needed to be clear about the risks, and what was being done to mitigate them. We should not claim that there is no risk” (from meeting 2) *and regarding the communications plan “emphasis on benefit to improving care is top priority, research second, UK plc third” (from meeting 3 – my emphasis, very telling, the real motivations are the reverse!)
  37. The scope of the data collected is still under discussion as to whether sensitive medical information about mental health and sexual health is included.
  38. Still confused? Dr. Neil Bhatia, GP and Caldicott has made a website about care.data www.care-data.info and you can use this flowchart to decide what to do about it
  39. If you are reading this you are fortunate enough to a) be able to read and b) have internet access. Go forth and talk to people about care.data. There are serious inequities in terms of access to information and ability to exercise the right to opt-out.
  40. And I’ll leave you with this because care.data stinks of some kind of tyranny and arguments on the internet end with comparisons to the Hitler according to Godwin’s Law. 

Annotations on the DH response to consultation on Migrant Access to the NHS

Annotations on the DH response to consultation on Migrant Access to the NHSmigrant access

I take an angry red pen* to the DH response from this phony ‘listening exercise’ of a consultation in an attempt to draw attention to DH proposals that will change the NHS irreversibly. We should all be worried about the ‘direction of travel’.

Be under no illusions – the NHS as we know it is being dismantled. The proposals set out within this document would restrict migrant access to the NHS by charging for visits to A&E and introducing a health surcharge of £200 payable on entry to the UK. GP consultations will remain free (for public health reasons) but it is unclear whether migrants will be chargeable for care following on from the initial consultation.

To implement these proposals stricter formal GP registration processes would be introduced to differentiate between chargeable and non-chargeable patients. In order to aid with the identification of chargeable patients the government wants to create an ‘information gateway’ so data can be shared between the NHS, DWP and HMRC amongst other agencies, with little regard for the Data Protection Act and the critical issue of the confidentiality of our medical records. Eeek.

For more information on the Migrant Health Bill take a look at –

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*Apologies in advance for my handwriting and thanks to my housemate Jo for providing me with the technology!