The Database State report commissioned by the Joseph Rowntree Reform Trust, written by the UK authors Anderson et al and published in March 2009 gives a sweeping - and damning - overview of databases, IT frameworks and general 'e-governance' initiatives concerned with managing (and hopefully improving) public health in the UK.
The NHS is constantly challenged to stretch its resources as effectively as possible. Initiatives such as NHS Direct ―allowing 'service users' to access basic medical advice quickly and inexpensively are steps forward; but the NHS itself is under scrutiny from public and media pressure fueled by freedom-of-information values and a corresponding legal framework under the Freedom of Information Act 2000.
The NHS is taking steps to respond to ever-growing public and political pressure to improve its service delivery and patient care, and is doing so by thinking smart: NHS information technology systems are being improved on a widespread basis, and the almost unimaginable amount of personal data the NHS controls ―and generates on patients and families is being marshaled to provide NHS researchers and research affiliates with all-new levels of complexity in the raw data available to them. The NHS, it should be noted, is the foremost organisation of its type in Europe planning a strategy for 'joined-up', information technology-driven research: and has a responsibility to promote best-practice techniques and values across countries subject to European data-protection law.
The authors of the Database State report are heavily critical of two health-driven databases in particular:
I have a serious two-fold issue with the language that the authors of the report use to describe these databases.
Firstly, these databases are not being constructed becuase of a malicious, Orwellian attempt by the government to cause public harm - only an ostensible public good - that is; better public health for UK citizens.
Secondly - this report is a nice hatchet-job version of the authors research - the language of the report and its traffic-light risk-ranking system is designed to be easy to understand and repeat verbatim.
For example, I don't think - even though the report is well-researched - that any legal 'expert would conlcude that databases are necessarily dead and buried from a legal perspective. There are legal issues - sure, but ones that are far from finally resolved, clear or decided either way.
But, of course, if's and but's do not a persuasive consultation make.
The NHS is taking steps to respond to ever-growing public and political pressure to improve its service delivery and patient care, and is doing so by thinking smart: NHS information technology systems are being improved on a widespread basis, and the almost unimaginable amount of personal data the NHS controls ―and generates on patients and families is being marshaled to provide NHS researchers and research affiliates with all-new levels of complexity in the raw data available to them. The NHS, it should be noted, is the foremost organisation of its type in Europe planning a strategy for 'joined-up', information technology-driven research: and has a responsibility to promote best-practice techniques and values across countries subject to European data-protection law.
The authors of the Database State report are heavily critical of two health-driven databases in particular:
"the NHS Detailed Care Record, which will hold GP and hospital records in remote servers controlled by the government, but to which many care providers can add their own comments, wikipedia-style, without proper control or accountability; and the Secondary Uses Service, which holds summaries of hospital and other treatment in a central system to support NHS administration and research"The authors of the report, using a traffic-light system of risk-ranking, deem these two databases to be a 'red' risk - namely the most serious of the three categories they create: "Red means that a database is almost certainly illegal under human rights or data protection law and should be scrapped or substantially redesigned. The collection and sharing of sensitive personal data may be disproportionate, or done without our consent, or without a proper legal basis; or there may be other major privacy or operational problems. Most of these systems already have a high public profile. One of them (the National DNA Database) has been condemned by the European Court of Human Rights, and both the Conservative Party and Liberal Democrats have promised to scrap many of the others."
I have a serious two-fold issue with the language that the authors of the report use to describe these databases.
Firstly, these databases are not being constructed becuase of a malicious, Orwellian attempt by the government to cause public harm - only an ostensible public good - that is; better public health for UK citizens.
Secondly - this report is a nice hatchet-job version of the authors research - the language of the report and its traffic-light risk-ranking system is designed to be easy to understand and repeat verbatim.
For example, I don't think - even though the report is well-researched - that any legal 'expert would conlcude that databases are necessarily dead and buried from a legal perspective. There are legal issues - sure, but ones that are far from finally resolved, clear or decided either way.
But, of course, if's and but's do not a persuasive consultation make.
Great article, Jamie. I'm glad these issues are being formally studied in the UK and that the results of the analysis are available for public discussion.