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Old 07-08-12, 17:00
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Sheila Struthers Sheila Struthers is offline
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As usual, Scotland is ahead of the game...

Background: Scotland's unique resources
Scotland has some of the best health service data in the world. A simple and far-sighted decision in the 1970's means that every person registered with a general practitioner (GP) in Scotland is allocated a unique identifying number from a centrally maintained register called the Community Health Index (CHI). The CHI number is the unique patient identifier in all primary health care activities, and is now used in hospital based clinical information systems achieving 93% compliance. It is the key to linking health data for research purposes. The CHI register contains data on address, postcode, GP, date and region of registration and, where relevant, date of death, allowing the demographic profile of Scotland, death and patient migration to be easily analysed. In addition, there is a commitment that all clinical communications contain core identification data, including the CHI number, so that clinical data can be accessed when and wherever required, and coded according to the international coding systems READ 3 and ICD10, with a commitment to move to SNOMED-CT.

Where the CHI number is unavailable (e.g. historical data) probability matching is used, and the record linkage unit within Information Services Division (ISD) of NHS National Services Scotland has an international reputation for using probability matching to link research databases to routine admissions and death data.

Compared with the rest of the UK, data quality is high, the centralisation of data in NHS Scotland is efficient, and the comprehensive computerisation of routine clinical data, alongside the mandated use of the CHI number for all health episodes, means that access to data for research is becoming easier and less expensive. Considerable progress has also been made in linking health data to other data sources through the Scottish Longitudinal Study which is one of the world's largest administrative datasets including a wealth of health, demographic and socio-economic data. This is particularly edifying, as more research is essential to help understand Scotland's poor health and mortality experience compared with elsewhere in the UK and Western Europe.

Building on these strengths, we believe that a step-change in the quality, quantity and governance of research using EPRs can now be achieved with a more joined-up Scottish-wide strategy. Our achievements to date have resulted from ad hoc linkages, with little co-ordination, and no identified research arm within ISD. The SHIP programme will provide a platform for Scottish record linkage that will provide lessons for EPR research throughout the UK and abroad. This is particularly timely in light of the emergence of national clinical datasets and large genomic studies such as UK Biobank and Generation Scotland.
That CHI number is your eCare identifier and will be used across all agencies from health, education, social work and police, to your bus pass and library card and everything in between.

From CHI Advisory Group minutes, Thursday 24 February 2011

HC highlighted the public perception of a “big brother” attitude towards public sector IT systems and asked whether the public would be madea ware of this programme. Information governance was a core function of SHIP. Focus groups would be held to understand the public reaction and establish what the public would be comfortable knowing in relation to this programme. JM had been involved with pharmacovigilance research.
The first stage of this research involved talking to selected members of
the public prior to a larger survey being carried out. JM was struck by the positive attitude the public had towards it and if they were reassured that proper care would be taken with personal data and that confidentiality would be protected.
The Chairman was concerned that consent had been assumed for the
use of CHI for this purpose.
The use of CHI was legitimate for routine
service delivery. SHIP was also not doing anything new from that laid
down in other agreements and which NSS had been doing for some time.
CHI was being used to generate an index number. The electoral role or
National Insurance number could equally have been used.
My bold
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