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Can we trust medical data systems as much as we trust our doctor?

Can we trust medical data systems as much as we trust our doctor?

New NHS Master-Database: Time for a Second Opinion

The Government proposes to launch a massive database of all NHS records, called Care.data. It will cost £50m, as a start.

On the face of it, anything that improves health care and aids future medical research, must be a good thing. The worries of privacy campaigners may be put down to their usual reaction when anything new is brought up.

However, in the light of all governments’ dismal record in big technology projects and the sophistication of hackers, fears may well be justified.

Everybody was to have been sent an explanatory leaflet with an opportunity to opt out. Some doctors have already said they will opt out on behalf of their patients. However, thousands of people claim they have received no such leaflet despite Royal Mail claiming they have ‘fulfilled their contract’ by delivering leaflets along with the junk mail!

So in the light of all the fuss, the Government has paused it for 6 months.

What Will Be Shared?

People’s past illnesses, medications, weight and blood pressures will be stored centrally. In summary:

  •  Your NHS number and date of birth.
  • Your postcode.
  • Your gender and ethnicity.
  • The medical diagnoses on your record, and any referrals.
  • Your prescriptions.
  • Your family history.
  • Your vaccinations and screening tests (smears, etc).
  • Your blood test results.
  • Your body mass index (BMI).
  • Your smoking and alcohol habits.

Across England, ‘The data will be sent electronically from the GP surgery’s computer system to the Health and Social Care Information Centre (HSCIC). This will happen automatically each month so that it will always be up-to-date.’

It’s big stuff. Therefore, in the interests of the debate that we ought to be having on this one, MBF Blogs presents both sides of the argument.

FOR being on Care.data

  • patients will get better, personalised information about risks, benefits and side-effects of their treatments and medication
  • improved co-ordinated data from infection rates and clinical outcomes from surgery
  • most information to third parties will be pseudonymised, making it almost impossible to be linked to individuals
  • health researchers must demonstrate medical research before getting data
  • private firms must demonstrate patient care befits before getting data
  • the privacy impact assessment by the NHS calls for stringent safeguards
  • faster detection of trends in public health, infectious outbreaks
  • better access for patients to their own data
  • commercial opportunities for app and website designers on health data

NHS website extolling virtues.

Personal view from health researcher, John Appleby, Your bits in their hands.

AGAINST being on Care.data

  • hacker risks from cyberspace for malicious and/or criminal purposes
  • patients may be re-identified if data off Care.data is linked to other available information in ‘jigsaw attacks’
  • extraction of data could undermine the NHS’s reputation for confidentiality
  • threat that future healthcare will be reduced if data is withheld
  • poor public confidence in NHS security – 2000 patient records are breached or lost every day
  • many well-known charities say it will target unfairly people with disabilities, especially if they choose to opt-out
  • insurance companies could get hold of data and increase premiums
  • if the majority opt out, the database could be degraded and of limited value
  • the public can access their own data already
  • targetted advertising of medicines, hospital and health facilities

One NHS surgery’s cautious view of the scheme.

NHS tactics commented upon by Big Brother Watch

Any thoughts to share? 
Will you opt out?
Let us know.

Health, data blogs on record:

As We Cure Old Diseases, Technology Brings Up New Ones, 11 February 2014

Open Data Is Bigger Than Big Data Once It’s Released, 4 February 2014

Fancy Some New Year Green and Healthy Resolutions? 6 January 2014

Technical Solutions for New Limbs Needn’t Cost an Arm and a Leg, 3 December 2013

Keep Taking the Tablets No Longer Has a Medical Connotation, 1 October 2013

You Have Just Two Years Left to Live, According to Your Death Test! 9 September 2013

In Cybercrime Defence, You’re Only As Good As Your Attackers’ Last Attempt, 17 June 2013

If More Data Sharing Is the Answer, What is the Question? 29 April 2013

Digital Health Shapes Up to Be a Financial Winning Marketplace, 12 November 2012

The NHS and New Technology, 25 January 2012

Image: Hospital