Family Research – English, Scottish and Irish Genealogy

10/7/2004

National Health Service Central Register (NHSCR)

History

On 29 September 1939, the United Kingdom Government Departments, that in peace time were responsible for the organisation of the decennial census, carried out an enumeration of the population. The Second World War had started three and a half weeks before and the enumeration was a vital early step towards putting the nation on a war footing: providing the necessary information for issuing national identity cards and food and clothing ration books, identifying both children eligible for evacuation from areas vulnerable to bombing and adults eligible for call up into the Armed Forces.

Scotland had historically always undertaken its own census and therefore the enumeration was carried out by the Department concerned, the General Register Office for Scotland (GROS). Every person was given their own unique civil registration number, based on where they were living on enumeration night, and for those born after 29 September 1939 the number allocated at the time the birth was registered- fulfilling the same purpose.

On the formation of the National Health Service (NHS) in 1948, there was no central index of patients registered with a General Practitioner (GP). This resulted in the rapid inflation of GP’s lists as persons moving about the country appeared on more than one list. As doctors were paid per patient this was expensive. When it was decided that a National Health Service Central Register (NHSCR) was needed, it was a comparatively simple operation to adopt the war time National Register, with its coverage of the whole population, for that purpose. The civil registration number doubled as the NHS Number and the Register performed a dual function for a short time until National Registration was abolished in 1952.

Although employed by GROS, staff carry out work on behalf of the Scottish Executive Department of Health. The register is an electronic database of all people born in Scotland and those registered with a National Heath Service general medical practitioner in Scotland. Its main purpose for existing is to permit the efficient movement of patient’s medical record envelopes as they transfer between Health Board and Area Health Authorities, leave the country, join the Armed Forces (or are dependants of Armed Forces personnel). It also records all deaths occurring in Scotland.

The information for each patient held on the database comprises:

NHS Number (Given to babies at the civil registration of their birth) or a number given to a patient who was born outside Scotland but who registers with a Scottish doctor.

Surname

Forename

Sex

Date of Birth

The Health Board Area of GP Registration in Scotland.
Electronic updates from the Community Health Index (the GP Registration system used by the Health Boards) are made every day to ensure the NHSCR is as up to date as possible with changes to patient’s circumstances.

The Register is also used to :

help approved medical researchers who have had their studies authorised by a Privacy Advisory Committee

issue NHS Numbers and anonymise records for adopted children. This upholds the Registrar General’s statutory requirement for ensuring that no link is made to the child’s old identity.

assist other Government Departments and certain approved outside bodies to identify the location of people resident in the UK.
What help can NHSCR offer?

The main purpose of NHSCR is to help Scottish Healthcare providers move patient’s medical records across UK borders. There is also potential to help with certain kinds of research projects. All requests to use the NHSCR database for medical research purposes are submitted to the Privacy Advisory Committee (PAC). The principal function of this advisory committee is to protect the privacy of patients while at the same time recognising the need for legitimate access to records by researchers and those involved in health administration for well-defined and bona fide purposes, subject to appropriate safeguards to maintain confidentiality. Here is the application form. Before your application can be considered, you will need to provide evidence that your study has ethical approval and informed consent from all the patients you wish to include in your study.

Confidentiality issues that will affect the way you identify the patients you wish to include in your study: Central Register takes their role of administering and protecting the sensitivity of health care data in their charge very seriously, working to the recommendations of the Caldicott Report and the Confidentiality and Security Advisory Group for Scotland – information on CSAGS found here.

Informed patient consent is the ideal for any medical research study requiring flagging or follow up using the NHSCR. When studies involve large data sets this may be impractical. In these cases permission may be given if certain criteria are met in the opinion of the Committee 1.
In addition, other approved privacy safeguards are applied when appropriate 2.

1 the proposal represents bona fide health research, appropriate ethical approval has been obtained; there would be a disproportionate effort to obtain consent for research.
2 data are anonymised and/or aggregated to prevent any risk of indirect disclosure; the researcher gives a written undertaking not to use any data provided to identify individuals.

Flagging Study
NHSCR is particularly useful for prospective studies in which the subjects of a study population (e.g persons employed in a particular industry, resident in a certain area, or who have received certain forms of treatment) can be identified on the Register. Their records are flagged with a cipher representing the study so that when deaths notified to NHSCR are found to relate to such entries, researchers can be informed of the death and supplied with copies of the death draft entries. Researchers can also be informed of other events that may occur before or after flagging e.g cancer registrations or for other reasons e.g. name change etc.

Status Study
NHS Central Register can help with the use of Vital Events data (Births Marriages and Deaths) for straightforward verification of the status of persons lost to follow up. For those found to have died, we will supply copies of the forms of particulars, giving details of the date and certified causes of death.

What happens then?
When the death of a flagged patient occurs in Scotland, (or anywhere in the United Kingdom) we can if requested, supply the researcher with a death certificate, bearing the cause of death coded to the World Health Organisation’s International Classification of Diseases (currently version ICD10).

Can we supply anything else apart from death certificates?
For approved Medical Research projects with the appropriate informed consent, we can supply cancer registration information, name of the health area in the UK in which the patient is currently registered, notification of change of name, or the fact a person is no longer registered with a UK NHS doctor.

Tracing patients who have been lost
As well as the 5 million plus records on our own database, we have a read-only link to Central Register Southport (the English and Welsh Register). We also have online access to the indexes of the 36 million births, deaths and marriages registered in Scotland since 1855. This allows us quick access to tracing ‘lost patients’ for health care providers and approved medical researchers.

Co-operation with NHSCR Southport
CR Edinburgh holds details of all those registered with a GP who live in Scotland and birth registration details for all people born in Scotland.
CR Southport maintains details of patients registered with a GP in England and Wales. Dialogue is maintained with Southport concerning those based south of the border and Registers co-operate to ensure that patients moving either way are not lost between the two systems thus helping us to provide a ‘seamless service’.

What are the current charges for these services?
NHSCR is a non-profit making Government Organisation whose charges are designed solely to cover the running costs of Medical Research section. Every financial year, the Scottish Executive Health Department allocate an amount of money to cover staff costs and operating overheads. We in turn calculate the percentage of our staff and other resources dedicated to Medical Research and apportion the funds on a pro-rata basis. Details of current charges can be found here.

Points of contact
For further informal enquiries, to obtain details of current costs, to arrange a visit to see the system or for queries on existing surveys, please contact:

Carolyn Macpherson
NHS Central Register
Ladywell House
Ladywell Road
Edinburgh EH12 7TF
TEL: 0131 314 4326
FAX: 0131 314 4389
E mail : carolyn.macpherson@gro-scotland.gov.uk

Martin Tyson
Departmental Record Officer
General Register Office for Scotland
New Register House
Edinburgh EH1 3YT
TEL: 0131 314 4426
FAX: 0131 314 4400
E mail :martin.tyson@gro-scotland.gov.uk

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