Perhaps we should avoid getting too po-faced here and look at the
practicalities.  [Although I share the general concern about a clear
access policy for access.]

Has the researcher already had access to the records?  If so then the
DPA has already been breached and copying would only make matters a
degree worse. Is copying essential?  What's wrong with on site data
entry which would allow WYAS to retain some control over the data? Does
the researcher have support and sponsorship from an institution for the
work?  What use will be made of the data and how widespread would its
distribution be?

On Bruce/Sarah S's point - although the health matters were a borough
responsibility at the time, was the ownership of them vested in the NHS
at the time the service was set up? Ultimate provenance and current
custody does not confer legal authority.

Data about current individual patients could not be 'published' or used
in the way suggested without the express approval of the patient
concerned but this sort of research is carried on all the time in closed
environments. Presumably to relate the data to current patients, their
permission would be required.

If anonymised data would do there are well tries ways of using masks in
filming or scanning which would allow access to the data without
compromising the personal privacy of the individual patients.  The
researcher would have to bear the cost and if fully rather than
marginally costed, that would probably put them off!



Peter Emmerson
Director
Emmerson Consulting Limited
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-----Original Message-----
From: The UK mailing list for archivists, conservators and records
managers. [mailto:[log in to unmask]] On Behalf Of Sarah
Westwood
Sent: 19 November 2002 14:00
To: [log in to unmask]
Subject: Re: Medical research and Data Protection

I have no specific expertise in this area, only an opinion, but I must
say
I find this a troubling issue. My experience is that for reasons of
privacy
even before the DPA was extended to paper records best practice was to
close all medical records to researchers for 100 years, as clearly
happens
at the Wellcome.  It would be helpful to learn from WYAS why a similar
policy hasn't been applied here which would have allowed this request to
be
turned down at the outset.

Sarah Westwood
Records Management Officer
Girton College

--On 19 November 2002 13:24 +0000 "Stark, Sarah"
<[log in to unmask]>
wrote:

>
> Bruce's question
> It is perhaps useful to consider what the situation would be if the
> registers had remained in a functioning hospital - would there be any
> consideration given to these questions of access and data protection
then
> if  the people seeking to use the info were medical researchers?
>
> is illuminating but nb Sylvia informed us that the records in question
> are  pregnancy registers for the Borough of Huddersfield 1916-1932
>
> so are we talking about records of local government or of the
hospitals
> in the borough?  The distinction might affect the approach taken to
the
> researchers' request.
> Sarah
>
>
> -----Original Message-----
> From: Susan Graham (7915 3722) [mailto:[log in to unmask]]
> Sent: 19 November 2002 12:52
> To: [log in to unmask]
> Subject: Re: Medical research and Data Protection
>
>
>
> In answer to Bruce's question, I thought I should flag up the GMC's
> guidance on patient confidentiality and the Department of Health's
work
> on data protection and patient data (still in progress; there is a
review
> underway at present).  The former can be found at:
>
> http://www.gmc-uk.org/standards/default.htm
>
> and what has been published on the latter via:
>
> http://www.doh.gov.uk/ipu/
>
> Susan Graham.
>
> -----Original Message-----
> From: Jackson, Bruce [mailto:[log in to unmask]]
> Sent: 19 Nov 2002 12:36
> To: [log in to unmask]
> Subject: Re: Medical research and Data Protection
>
> My own feelings about this would tend to line up with Dr Hilton's but
I
> am  sure there is a way forward, which in some respects must be
followed
> with a  fair degree of frequency in medical research.
>
> There presumably is a current Health Authority  (or Hospital Trust)
which
> continues to have responsibility for the area covered by the registers
(
> in  both geographical or functional terms. The matter of access should
be
> referred to them for a decision by their Ethics Committee. The
> researchers  would of course still need to give a guarantee of
respecting
> the anonymity  of the persons named.
>
> It is perhaps useful to consider what the situation would be if the
> registers had remained in a functioning hospital - would there be any
> consideration given to these questions of access and data protection
then
> if  the people seeking to use the info were medical researchers?
>
> Bruce Jackson
> Lancashire Record Office
> 19 Nov 2002
>
> -----Original Message-----
> From: Hilton ,Dr Christopher [mailto:[log in to unmask]]
> Sent: 19 November 2002 12:13
> To: [log in to unmask]
> Subject: Medical research and Data Protection
>
> My own feeling would be not to go along with the project in its
current
> form.
> If the data are neatly kept in registers it's clearly the sort of
> structured  data set, in which individuals would readily be findable,
to
> which the Data  Protection Act applies.  DP only applies to living
> persons of course but you  certainly can't be sure that all the
> individuals are dead (my grandmother,  for example, is comfortably of
an
> age to feature in these records and still  going strong).  Indeed,
those
> most likely to be alive still are perhaps  those relating to whom the
> information would be most sensitive (i.e. those  who were youngest at
the
> time: teenage and/or pre-marital pregnancies).  The  only way to be
sure
> that you're not infringing the rights of a living  individual is to
shut
> the material for an appropriate time bracket (we use  100 years from
> record creation).
> I can see that there could be scientific research value in the
material
> and  if it were thoroughly anonymised that would be one way of
unlocking
> that  value without infringing individuals' DP rights; but it sounds
as
> though the  project is actually interested in individuals, which I
don't
> think is  workable under the law.  Another thing that troubles me is
that
> it sounds as  though the research is being carried out by a 3rd party
> rather than by the  health body that collected the information or by
its
> successors, and  distributing this type of information to an outside
> organisation also goes  against the aims of DP.
> Certainly our data protection policy wouldn't allow this project as it
> stands.  I'd be interested in other people's views.
> Chris Hilton
>
> Dr. Christopher Hilton
> Senior Archivist, Department of Archives and Manuscripts
> Wellcome Library for the History & Understanding of Medicine
> The Wellcome Trust
> 183 Euston Road
> LONDON NW1 2BE
> Tel.: (+44) 020 7611 8481
>
> The Wellcome Trust is a registered charity, no. 210183.
> Its sole Trustee is The Wellcome Trust Limited, a company
> registered in England, no. 2711000, whose registered office
> is 183 Euston Road, London NW1 2BE.
>
> Date:    Mon, 18 Nov 2002 12:32:55 +0000
> From:    Sylvia Thomas <[log in to unmask]>
> Subject: Medical research and Data Protection
>
> West Yorkshire Archive Service has been asked to provide copies of
> pregnancy registers for the Borough of Huddersfield 1916-1932 for a
> university research project which aims to study changes in fertility
and
> mortality in the first half of the twentieth century, and to clarify
the
> link between childhood conditions and subsequent current adult
illnesses.
>
> The records give details of all the pregnancies and resulting
mortality
> for  women living in Huddersfield in this period, as well as sometimes
> yielding  information on medical topics such as the pelvic size of
> pregnant women and  the birth weight of their children.
>
> The researcher's intention is to computerise these records and to
produce
> a  CD-ROM of the information.
>
> We would value advice on how to respond to this request, in view of
the
> requirements of the Data Protection Act.  We cannot readily anonymise
the
> information and, in any case, it seems that there may be a wish to
link
> information to current patients.  It would be quite possible for a
number
> of people still to be alive who were pregnant in the years up to 1932.
>
> What do you think?
>
> Sylvia Thomas
> County Archivist
> West Yorkshire Archive Service
> Registry of Deeds, Newstead Road
> Wakefield
> WF1 2DE
> [log in to unmask]
>
>
>
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Sarah Westwood
Records Management Officer
Girton College
Cambridge CB3 0JG

Tel: 01223 338976
Fax: 01223 338896
Website: www.girton.cam.ac.uk