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Thursday 5 February 2015

NHS Care.data >>> How much data should be shared? >>> And who with?

The issues around the NHS Care.data project
Futures Forum: NHS Care.data programme to be tested

... have stimulated considerable debate:
Futures Forum: The pros and cons of sharing medical information

The question is to what extent medical information will be shared 
- and now it seems there will be 'no choice':

NHS disregards patient requests to opt out of sharing medical records
Officials now admit they shared data because otherwise it would have affected patients’ treatment
Thursday 22 January 2015 
The NHS has disregarded tens of thousands of requests by patients to opt out of the health service’s system of sharing medical records. Officials have admitted that not sharing the data would affect the treatment patients received – such as cancer screening services.
NHS disregards patient requests to opt out of sharing medical records | Society | The Guardian

NHS data privacy plans 'flawed'
Big Data analysis allows identification of individuals via anonymised data.
January 29, 2015
Controversial NHS plans to transfer patient records from local GP practices into a national database has raised concerns around a claimed lack of adequate security controls to ensure that such sensitive data assets are robustly protected. The NHS project ‘care.data' aims to upload anonymised records onto a centralised national database which will facilitate free access for drug companies, academics, and researchers.

NHS data privacy plans 'flawed' - SC Magazine UK

Surgeons ask NHS England to rethink policy of publishing patients’ death rates
Bruce Keogh and Jeremy Hunt say policy is key to raising standards in the health service
Friday 30 January 2015
Heart surgeons have written to the NHS England chief executive asking for a rethink of the policy of publishing patients’ death rates, claiming it is causing some colleagues to avoid risky operations.
Surgeons ask NHS England to rethink policy of publishing patients’ death rates | Society | The Guardian

'Anonymous' NHS database could still allow patients to be identified, expert warns
Care.data uploads 'anonymised' patient records and hospital admissions on to a national database that can be accessed for a fee by drug companies, academics and other approved researchers
Monday 26 January 2015
A controversial plan to transfer the medical records of NHS patients from GP surgeries to a national database has failed to address a major privacy concern that jeopardises patient confidentiality, according to a leading IT security expert.
'Anonymous' NHS database could still allow patients to be identified, expert warns - Health News - Health & Families - The Independent

However, there are those who feel that such data sharing would be of benefit:

Better use of data could help prevent future NHS crisesWe need to get much better at using the information we have to predict the impact of changes in primary care, social care and community services, as well as in underlying patterns of disease
Tuesday 27 January 2015
It has come as some surprise to me, as an operations director in an acute hospital, that even the more technical details of my world have become the subject of public debate, as one hospital after another has faced a crisis with emergency care.
Steve Connor reports “‘Anonymous’ NHS database could still allow patients to be identified, expert warns” (26 January).
Friday 30 January 2015
Nobody who understands pseudonymisation claims it makes re-identification of patients impossible. It only makes it hard to do. The controls on the use of the data and the sanctions associated with them are what really protect patients’ confidentiality. This allows the major benefits to be secured with little practical risk to confidentiality. And most people are already prepared to cede a tiny risk to their confidentiality when there are big benefits (andcare.data offers big benefits to the quality of much NHS care). The ability to link the same patients’ records over time is essential to realising those benefits (though we rarely need to know who the patient is). For an example of the gains see http://www.macmillan.org.uk/Documents/AboutUs/Research/ Researchandevaluation reports/Routes-from-diagnosis-report.pdf.
Letters: NHS data-sharing is good for patients - Comment - Voices - The Independent

In the last couple of days, the debate around 'transparency' and 'sharing' has widened:

Health advances using ‘big data’ at risk, ministers warned
Britain risks squandering the potential of “big data” to improve healthcare and advance medical research unless more is done to win public support for the sharing of patient information, ministers have been warned.
February 3, 2015
A report by leading bioethicists called for greater transparency over how medical data are used and the introduction of criminal penalties for its misuse in order to increase public trust. The recommendations from the Nuffield Council on Bioethics follows controversy over the government’s proposed Care.data scheme to pool patient data from general practices and hospitals in a single national database.

Health advances using ‘big data’ at risk, ministers warned - FT.com

GP practices across UK face compulsory data protection audits
GP practices face compulsory audits from this month by the information commissioner to check their compliance with data protection laws.
2 February 2015 
GP leaders warned that the moves could put patients at risk if they piled more bureaucracy on top of the heavy workloads already faced by practices.
Following an overhaul of regulations, from 1 February the information commissioner's office (ICO), will be able to carry out compulsory audits to assess data protection by organisations including GP practices.

GP practices across UK face compulsory data protection audits | GPonline

ICO's data protection tentacles will penetrate NHS bodies
But WON'T probe private firms' services to public healthcare
3 Feb 2015
NHS bodies in the UK can now be forced to open themselves up to data protection audits under new powers handed to the Information Commissioner's Office (ICO). The watchdog told Out-Law.com that its audits regime follows a "participative approach" and that therefore it would first ask health bodies if they would voluntarily commit to a review of their data protection policies and practices. However, the new compulsory audit powers can be used to force the bodies to participate if the ICO identifies a need to carry out such a review.

ICO's data protection tentacles will penetrate NHS bodies • The Register
ICO's data protection audit powers extended to cover NHS bodies - Out-Law.com

See comment at:
The pros and cons of sharing medical information
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