DISEASE REGISTERS AND DATA LINKAGE
WITHIN THE NHS
6.10 As noted in paragraph 5.12 - and in contrast
to the position in England and Wales - the Health Service in Scotland
(covering 5 million people) had developed a system of data linkage
between the various data sets for which it had responsibility.
This had proved to be an invaluable resource both for clinical
audit purposes and health service management as well as for epidemiological
research.
6.11 At our Imperial College
seminar (see Appendix 4), we heard from Dr Aylin, Professor Purves,
Professor Forman and others about the great difficulties and uncertainties
in linking different data sets within the NHS in England and Wales.
Some of the problems were:
(a) lack of a common computer platform and standard
software in the NHS, so that often the different systems could
not 'talk' to each other - for example, data from the maternity
system were often not downloaded into the child health system
but had to be copied by hand from one computerised database to
the other[40];
(b) absence of a unique
identifier (such as the NHS number[41])
common to all records[42],
with allocation at birth[43]
in order to capture all relevant data[44];