An introduction to Information Services Division s administrative datasets

Transcription

1 An introduction to Information Services Division s administrative datasets This document is a useful starting point for anyone unfamiliar with Information Services Division administrative data. Detailed information about the major research useful ISD administrative datasets are available from the ADLS website. 1. About Information Services Division The Information Services Division (ISD) is part of NHS National Services Scotland and collects, manages and centrally holds a wide variety of Scottish health data. ISD has been the authoritative source of Scottish national healthcare statistics for over 50 years. The data is used to enhance decisions about Scottish health care to improve the health of the people of Scotland. An overview of some of the major research useful administrative datasets held by ISD is provided below. 2. ISD research useful administrative datasets ISD hold many administrative datasets that are useful for research purposes. They are generally categorised by a Scottish Morbidity Record (SMR) number and detailed information on all of these are available from the ADLS website. The main ones to note are: i. Outpatient Attendance dataset (SMR00) This dataset collects episode level data from patients on new and follow up appointments at outpatient clinics in all specialities (except A&E and Genito-Urinary Medicine). Example variables include patient identifiers (such as name, date of birth, Community Health Index number, NHS number) as well as postcode, ethnicity, clinical speciality, appointment management data and attendance status (e.g. did not attend ) data. Operation / procedure information is also collected. Data is available from 1997 onwards. ii. General Acute / Inpatient dataset (SMR01) This dataset collects episode level data on hospital inpatient and day case charges from acute specialities from hospitals in Scotland. The dataset contains patient identifiers such as name, date of birth, Community Health Index number, NHS number, postcode and ethnicity and episode management data. Of particular interest to researchers would be variables such as where the episode took place, admission type (includes patient injury classifications such as self-inflicted or home accident), waiting times, patients condition

2 (as classified under ICD-10), operations, and discharge location. Data is available from 1981 onwards. iii. Maternity Inpatient and Day Cases dataset (SMR02) This dataset collects episode level data every time a mother goes in for an obstetric event and includes information on mother and baby characteristics, birth weight, gestational age, mode of delivery, induction and outcome of pregnancy and where a baby is delivered. Data is available from 1981 onwards. iv. Mental Health Inpatient and Day Case dataset (SMR04) This dataset collects episode level data on patients that are receiving care at psychiatric hospitals at the point of both admission and discharge. Patients contact with specialist community mental health teams, general practice or outpatient facilities are not included. The dataset includes information on patient characteristics, mental health diagnosis, length of stay, destination of discharge, whether they are admitted under Mental Health Legislation and any previous psychiatric care. Patient identifiers such as name, date of birth, Community Health Index number, NHS number, and postcode are included. Data is available from 1981 onwards. v. Scottish Cancer Registry (SMR06) The Scottish Cancer Registry collects information on Scottish residents when they are diagnosed with malignant (and some benign) tumours. The registry began in 1958 collecting personal, demographic and diagnosis information (such as site, histology, behaviour, histological confirmation and hospital of diagnosis) from cancer patients. In 1997, a new electronic cancer recording system was launched and at this point the registry was extended to include extra information on tumour stage (for breast, cervical and colorectal cancer), tumour grade and treatment information. vi. Neonatal Inpatient dataset (SMR11) The Neonatal Inpatient dataset provided episode level data on babies discharged from hospital from 1975 to 2002 and supplemented the mother s delivery information as recorded in the Mother s Maternity and Inpatient Day Cases dataset (SMR02). In 2002, the dataset was phased out and superseded by the Scottish Birth Record (SBR) due to inconsistencies in recording over time. The dataset has had various iterations over time. More information on these changes is available from the ADLS website. vii. Scottish Drug Misuse Database The Scottish Drug Misuse Database (SDMD) offers a profile of the misuse of drugs, based on anonymous information about new problem drug users seen at a broad range of services across Scotland. Services contributing to the database consist mainly of specialist drug services and general practitioners. The system has been in operation in Scotland since August 1990.

3 The database holds a wide variety of information on the characteristics of new clients coming to the attention of medical services (general practice, hospital etc.) and specialist drug services (statutory and non-statutory). This includes client demographics, social profile, dependants, prescription profile and injecting / sharing information. viii. Scottish Birth Record (SBR) The Scottish Birth Record was introduced in 2002 as a replacement for SMR11 and is a universal record for all babies born in Scotland. It provides the functionality to record all of a baby s neonatal care in Scotland, from antenatal through to post delivery, including readmissions and transfers in one electronic record and also supplements the mother s delivery information as recorded in SMR02. The SBR is based on individuals rather than episodes (as for the SMR series) and is completed for all births including still births and home births. The Scottish Birth Record system collects a wide variety of information on the child from birth and during the babies first year of life and is extensive, with up to four hundred data items recorded for any one individual. This includes gestation, weight, congenital anomalies and discharge details. Identifiers such as name, date of birth, Community Health Index number and postcode are also included. ix. Maternity and Neonatal Linked Database The Maternity and Neonatal Linked Database contains obstetric histories relating to all mothers giving birth in Scotland from 1975 onwards together with linked records relating to all of her offspring held together in patient groups. The database contains data from SMR02, 11, SBR, Scottish Stillbirth and Infant Death Survey and National Records of Scotland birth and death records. The database is updated every six months. These datasets were added to the database at different time points. More information about this is available from the ADLS website. x. Scottish Morbidity Database The Scottish Morbidity Database covers all patients in Scotland with non-obstetric hospital admissions together with any cancer registration and corresponding death records. The database consists of SMR01, 04, 06 and National Records of Scotland death records from approximately 1980 onwards. The database is an extremely useful research tool for looking at patient pathways and follow-up, such as readmission to hospital and survival. Its public health uses also include looking at co-morbidity and relationships between diseases. The database also has the potential to be used to estimate the incidence and prevalence for a wide range of diseases involving hospital admission and/or death. xi. Prescribing Information System The Prescribing Information System (PIS) is the definitive data source for all prescribing relating to all medicines and their costs that are prescribed and dispensed in the community in Scotland. The information is supplied by Practitioner Services Division

4 (PSD) who are responsible for the processing and pricing of all prescriptions dispensed in Scotland. These data are augmented with information on prescriptions written in Scotland that were dispensed elsewhere in the United Kingdom. Data includes CHI number, prescriber and dispenser details for community prescribing, costs and drug information. Data on practices (e.g. list size), organisational structures (e.g. practices within Community Health Partnerships (CHPs) and NHS Boards), prescribable items (eg manufacturer, formulation code, strength) are also included. 3. Geographical measures A wide variety of geographical data are included in most of the ISD administrative datasets including Scottish Index of Multiple Deprivation and Carstairs measures, census output area, NHS Board, Electoral Ward and Parliamentary constituency. Full details are available from the individual dataset entries on the ADLS website. 4. Dataset timelines ISD administrative data has been collected at different time points. A graphical representation of this is available from the ADLS website. 5. Data catalogues Data catalogues for the individual datasets detailed in this summary are available to download from the ISD PDF pack on the ADLS website. Some datasets may have more than one catalogue. Generally this would occur if the data was collected prior to In 1997 revisions to dataset collections were amended to better fit NHS reporting requirements (such revisions are known as Coppish revisions.) 6. Access arrangements i. Summary level data ISD do publish summary data for some of their administrative datasets. Information about this is available from the individual dataset entries on the ADLS website. ii. Non patient identifiable data It is possible in most cases to request non patient identifiable data from ISD. Information about who to contact is available from the individual dataset entries on the ADLS website. Releases of data may be subject to disclosure control procedures including suppression or aggregation of data to mitigate against potential patient identification. This is most often required in the case of data pertaining to small geographical areas and/or rare diseases.

5 iii. Patient identifiable data The release of any patient identifiable data for research purposes is only allowed under carefully controlled circumstances. Approval is needed from the National Services Scotland Privacy Advisory Committee (PAC). PAC provides advice on requests for the release of patient identifiable information from Information Services Division (ISD) and the National Records of Scotland (NRS). For researchers, a PAC application is required when either (i) information containing patient identifiable variables is to be released or (ii) for record linkage of previously unlinked datasets. More information on the PAC application process is available from the individual dataset entries on the ADLS website. 7. Additional ISD research services ISD provide a variety of services and resources to help researchers to use their data as detailed below. i. edris (electronic Data Research and Innovation Service) As part of the ScottisH Informatics Programme (SHIP), ISD has developed edris to assist researchers to access and use use their health data. The level of service can be tailored to meet reseracher requirements and includes: A named person to support your study from start to finish (edris Research Coordinator). Assistance with study design. Expert advice on study feasibility. Negotiation and agreement of deliverables and timescales with all parties. Liaison with data suppliers to secure data. Assistance with securing required approvals. Liaison with the technical infrastructure including indexing and linkage. More information on edris is available from the ISD website. ii. Data dictionary The Data Dictionary is the main online source for health and social care data definitions and standards. It also includes the SMR Dataset manual which covers all SMR hospital activity datasets and contains definitions, format, field lengths, codes and values as well as attributes and recording guidance.

6 As the dictionary contains a lot of information it can be overwhelming at first and it is recommended that you through all the introductory guidance to help you navigate around the site. Metadata can also be found from the Data dictionary. All data catalogues with variable names for the various ISD SMR datasets are available to download from our ISD Scotland PDF pack from the ADLS website. iii. Terminology Services The ISD Terminology Services provides bespoke training and advice to support researchers to use ISD data. The service can assist researchers by helping them to select the correct codes for analyses of healthcare data and interpret needs for healthcare information requests. Advice on coding differences between Scotland and other UK countries is also available. The Terminology Services also provide training in ICD10, OPCS- 4, Read and SNOMED-CT standards. The Terminology Helpdesk is available between Tuesday and Thursday and can be contacted on or [email protected]. iv. Statement of administrative sources The ISD produce a statement which provides a library of administrative sources used for the production of National Statistics. 7. ISD contact points There is no single contact point for ISD administrative data research enquiries. Individual ISD contact points for each administrative dataset are detailed in the individual dataset entries on the ADLS website or via the interactive information map. General enquires can also be directed to the ADLS on or [email protected]. 8. Further information A detailed section on NHS Scotland administrative data and their resources for research is available from the ADLS website at introduction-to-nhs-scotland/. January Version 1.3