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RADSTATS  May 2011

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Subject:

Re: public data principles

From:

John Urquhart <[log in to unmask]>

Reply-To:

John Urquhart <[log in to unmask]>

Date:

Tue, 24 May 2011 12:37:10 +0100

Content-Type:

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On 18 May 2011 18:34, Ludi Simpson <[log in to unmask]> wrote:
> Has anyone developed a radical response to the government’s Transparency
> board and its public data principles now out for consultation? See
> http://data.gov.uk/blog/new-public-sector-transparency-board-and-public-data-transparency-principles

Dear Ludi,

Yes, for some time I have been particularly concerned about the impact
of the Data Protection Act on the public's right to know of health
anomalies in their locality.  As you may know, there was a request for
childhood leukaemia figures in south west Scotland which was appealed
by NHS Scotland and finally went up to Supreme Court level, where it
was decided that full disclosure could not be allowed at ward level.
However, the interpretation of the Data Protection Act for the release
of health data seems to have reached absurd proportions, exemplified
by my correspondence with NHS Scotland, when I asked for the annual
figures for myeloid leukaemia in children under the age of one, to see
if there was any significant variation at the time of the Chernobyl
accident.  These figures were not released to me on the grounds that
they were less than five per annum.  I can see no circumstances in
which knowing the number of myeloid leukaemias in the whole of
Scotland could possibly aid the identification of individual cases.
Of course, mine was a research interest, but the problem must be
particularly acute for a family in a particular village whose child
has leukaemia and they suspect some environmental source such as a
nuclear plant, municipal waste incinerator or 'phone mast.  After all,
the public demands the right to know if a paedophile lives in their
midst, why can’t they have the right to know of a facility that may
have detrimental health impacts, so that they can pursue their
democratic right to campaign against it?  If some poor woman gets
battered nearly to death in a leafy lane in Surrey, her personal
details are spread all over the newspapers, but the existence of a
childhood cancer cluster is now hidden from public knowledge.  If your
child has leukaemia, you have a very strong interest in knowing
whether other children in your area also have the same disease.

There is another danger in the lack of transparency for localised
health data, namely if the information is incorrect or altered, no one
can check the details.  This is particularly important where such
information is politically sensitive, for example the occurrence of,
say, childhood thyroid cancer cases near a nuclear power plant.  In
1983, I carried out the statistical research for the YTV film
“Windscale, the Nuclear Laundry” which discovered six cases of
childhood leukaemia near the Windscale (Sellafield) nuclear
reprocessing plant.  Three of the cases were known by the health
authority, and three by a local doctor.  Three cases by themselves
would not have been out of the ordinary but the combination of records
leading to six cases was exceptional.  However, it took the resources
of a large TV company to ferret out the truth.  Nowadays, we need a
more rational approach.

Yes, privacy for an individual's health record is important, but
public interest in this area remains paramount.  My suggestion is that
all health information should be published about a locality when the
number of cases is two or more.  In many instances, this will not be
significant, but on occasions it may help to lead to important new
epidemiological information without pin-pointing any one individual.

Best wishes,

John Urquhart

P.S.  I can't seem to get this as a comment on the comments section of
the government  website.  Every time I try to post it, it just
disappears.

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