ZDnet: NHS patients' health data to be anonymised and shared

Andrew Watson · **Posted:** Wed, 23 May 2012 09:15:17 +0000

http://www.zdnet.co.uk/news/security-ma ... -40155260/

NHS patients' health data to be anonymised and shared
By Jo Best, ZDNet UK, 21 May, 2012 16:13

The government has finally released the long-awaited NHS Information Strategy.

The document, initially set for release last year, was launched on Monday and paves the way for the anonymisation and reuse of patient data.

"Our electronic care records [are] becoming a core source of all professional information. These records are a rich source of information on quality and outcomes. When combined and made available in anonymised form, this will support a shift to measure and reward quality and clinically meaningful outcomes for care and health," the strategy document says.

According to the strategy, "meaningful" information and evidence on outcomes will be routinely captured in future by health and social care workers, and used as a source of business intelligence. The information will then be used for research and to improve health systems.

From April 2013, the Health and Social Care Information Board will be charged with the collection, secure linking, storage and publication of the data.

In advance of the information reuse scheme going live, the government has commissioned a review of information governance arrangements "to ensure that there is an appropriate balance" between protecting individuals' personal health information, and using the information to improve public health. The independent review will be led by Dame Fiona Caldicott and will report later this year.

...

Andrew Watson · **Posted:** Wed, 23 May 2012 09:17:32 +0000

That strategy document is:

http://www.dh.gov.uk/en/Publicationsand ... /DH_134181

The power of information: Putting all of us in control of the health and care information we need

...

1.5 The forthcoming care and support White Paper will take forward the ambition for
meaningful information and evidence routinely captured and used by professionals
and service users, and where care records link across the services we use. Across
social care, public health and healthcare, the intention is for combined then
anonymised data from individual records, along with other sources, to become the
main source of the information used to drive system improvement, our health and
care choices, integration, efficiency, research, support growth and allow robust
measurement of care outcomes.

..

3.22 This strategy’s vision is to record and collect high-quality data in our health and care
records for the primary purpose of ensuring we receive high-quality care, to link
our records and data electronically, to share it appropriately and to extract from it
data that is combined and then made anonymous, to be used for a wide range of
secondary purposes.

...

annex B: transparency and open data – our open data strategy

...

Protecting your confidentiality

The Department recognises that for data held in the health and care sector there are also
risks in releasing data. It needs to balance the significant benefits from being able to link
up data across health and care services with the need to ensure that it protects patient
confidentiality. So while it is right and proper that Government should assume that it will
make data available to support public accountability it must have in place a systematic
approach to ensuring that it has considered any risks to individual confidentiality, and taken
appropriate measures to address these. The Health and Social Care Transparency panel will
have a key role in supporting and advising the Department on these issues.
Although publicly available datasets will always be anonymised there can be a risk of ‘jigsaw’
identification. For example if data at hospital episode level were to be released – if someone
knows the hospital, admission date and approximate age of a patient, they may well be
able to deduce which record relates to that person. The risks are low and there are ways
of mitigating it (eg. removing low numbers or aggregating data sets) but these can also
reduce the value of the data. Our view is therefore that the level of granularity of data to be
released needs to be reviewed carefully on a case-by-case basis for each dataset.
For every release of data we will consider:

• the purpose and benefits of the data;
• data protection and related issues, consulting with the Information Commissioner where
necessary;
• confidentiality and the potential for ‘jigsaw’ identification from data;
• the format and specific level of data that should be released;
• the costs of collecting, releasing or linking the data and who should pay;
• any commercial implications or impacts on current information providers; and
• the impact on the broader transparency agenda, for example will the data promote a
marketplace of intermediaries to present the data for specific audience?

Wherever possible we will make data available under the Open Government Licence and at
no cost to the user.

...

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ZDnet: NHS patients' health data to be anonymised and shared

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