Table 1 An overview and summary of some potential electronic databases for resource-use information; please note that the list is not exhaustive

Clinical Practice Research Datalink (CPRD)

Primary care

Collects data from Vision (historically), EMIS (more recently), and potentially SystmOne (being piloted at time of writing) GP practice software systems. Reportedly covers over 11.3 million patients (4.4 million active patients) from 674 practices in the UK ^b – this was the figure reported for just Vision practices.

Yes (Read code based)

The Health Improvement Network (THIN) database

Primary care

Collects data from Vision GP practice software systems. Reportedly covers 11.1 million patients (3.7 million active patients) from 562 general practices in the UK ^b

Yes (Read code based)

ResearchOne

Primary care (and other contributing organisations – see ‘comments’)

Collects data from SystmOne GP practice software systems. Also reportedly collects data from other services using SystmOne. As of 2013, ResearchOne reportedly includes 5 million health records from 400 contributing organisations across 10 organisation types (ranging from hospitals to end-of-life organisations)^b

Yes (Read code based)

QResearch

Primary care

Collects data from EMIS GP practice software systems. Based on current publications associated with this dataset, unsure what resource-use data is available as not used for economic studies. As of 2015, the database reportedly obtains data from a sample of approximately 1000 practices covering a population of 18 million people^b

Yes (Read code based)

Secondary Uses Service (SUS)

Healthcare data

Designed to provide anonymous patient-based data for purposes other than direct clinical care, such as healthcare planning, commissioning, public health, clinical audit and governance, benchmarking, performance improvement, medical research and national policy development. SUS will only provide data for the region of interest to the commissioners if obtained through NHS commissioners. SUS is updated once a month.

Yes (note, includes a variety of commissioning data)^d

Hospital Episode Statistics (HES)

Secondary care

Hospital care data (inpatient, outpatient, A&E, and critical care). Once a month and at pre-arranged dates during the year, SUS takes an extract from their database and sends it to HES – it is this data which populates the HES database.

Yes (online)^e

General Practice Extraction Service (GPES)

Primary care

GPES is part of the GP collection service alongside the Calculating Quality Reporting Service (CQRS) used to record practice participation and to process and display information. GPES collects primary care information from GP IT systems and then presents it at a National level. Used to inform GP payments. Collects both anonymised and person-identifiable data (PID; when permitted). Main focus is clinical data (i.e. Quality Outcomes Framework [QOF] data), not resource-use data.

General overview of data that can be viewed in GPES is listed online^f

Diagnostic Imaging Dataset (DIDS)

Diagnostic

NHS-funded diagnostic imaging tests

Yes (online)^g

Improving Access to Psychological Therapies (IAPT)

Mental health

Adults in receipt of NHS-funded IAPT services (see data dictionary).

Yes (online)^h

Mental Health Services Data Set (MHSDS^b

Mental health

Record-level data on care of children, young people and adults who are in contact with mental health, learning disability or autism spectrum disorder services.

Yes (online)ⁱ

Patient Administration System (PAS)

Hospital

Hospitals collect data into PAS (in Sheffield this is the Lorenzo system, which is a well-established system in England). This dataset includes basic hospital activity (i.e. inpatient, outpatient, and A&E); other detailed clinical information may be held on other hospital systems.

See HES data dictionary for a general overview

SystmOne, EMIS, Vision

Primary care

SystmOne, EMIS and Vision currently dominant primary care software systems in England. Each collects and records data slightly differently, but underlying data are coded based on Read Codes (most if not all should be using SNOMED CT by April 2018). Note, the methods used by Franklin et al (2014) did not rely on the use of Read Codes, rather front-end report outputs which were processed using visual basic for application (VBA) scripts.

See ‘Read Codes and SNOMED CT’

Intermediate care, mental health trust, ambulance services, and social care systems

Various services

The study by M Franklin, V Berdunov et al (2014) collected raw electronic data from all these systems. It is possible to collect these data after discussion with the service and consent agreements from the patients of interest.

No – data based on discussion with services

Read Codes and SNOMED CT

Primary care

Read codes can be obtained from the Technology Reference data Update Distribution (TRUD) website. SNOMED CT is a more unified coding base than current Read codes. Software systems have been developed to export information from primary care systems in a more usable manner, such as the Apollo software system.

Yes – a Read Browser and Read codes are required ^j

GP Connect and Data Commissioning Flows

Primary care (initially)

GP Connect and Data Commissioning Flows works are in their early stages; it is difficult to gauge the possible benefits these plans will bring from a researcher perspective.

N/A

NorthWest EHealth linked database

Linked datasets

Information on medications, symptoms and use of healthcare facilities.

Contact provider

CALIBER dataset

Linked datasets

Linked data for primary care (CPRD), coded hospital records (HES), social deprivation information and cause-specific mortality data (ONS).

Contact provider