| Literature DB >> 35520099 |
Louise Mc Grath-Lone1, Matthew A Jay2, Ruth Blackburn1, Emma Gordon3, Ania Zylbersztejn2, Linda Wiljaars2, Ruth Gilbert1,2.
Abstract
Introduction: Administrative data are a valuable research resource, but are under-utilised in the UK due to governance, technical and other barriers (e.g., the time and effort taken to gain secure data access). In recent years, there has been considerable government investment in making administrative data "research-ready", but there is no definition of what this term means. A common understanding of what constitutes research-ready administrative data is needed to establish clear principles and frameworks for their development and the realisation of their full research potential. Objective: To define the characteristics of research-ready administrative data based on a systematic review and synthesis of existing literature.Entities:
Keywords: administrative data; research-ready; systematic review; thematic analysis
Mesh:
Year: 2022 PMID: 35520099 PMCID: PMC9052961 DOI: 10.23889/ijpds.v6i1.1718
Source DB: PubMed Journal: Int J Popul Data Sci ISSN: 2399-4908
Figure 1: Flow diagram of study selection|
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| Australia | Health | Rural Acute Hospital Database Register (RAHDaR) | Longitudinal health data from 10 hospitals in South West Victoria Australia. | Kloot | To profile a data resource. |
| Peck | To examine patterns of childhood injuries presenting to rural Urgent Care Centres. | ||||
| Terry | To examine whether asthma presentations to rural hospitals are represented in national datasets. | ||||
| Terry | To examine whether asthma presentations to rural hospitals are represented in national datasets. | ||||
| Peck | To compare socioeconomic characteristics of children with injury-related emergency presentations at a rural Urgent Care Center versus Emergency Department. | ||||
| Utilities | Visualising Victoria’s Groundwater web portal | Groundwater monitoring data for the State of Victoria, Australia. | Dahlhaus | To evaluate the social impact of a data visualisation portal, including the support of decision making. | |
| Multiple | Mothers and Gestation in Custody (MAGIC) cohort | Linked government data related to health and justice for women in New South Wales. | Hilder | To determine pregnancy prison exposure for incarcerated women. | |
| Brazil | Multiple | Centre for Data and Knowledge Integration for Health (CIDACS) | Several linked government databases, including health, social benefits and housing. | Barreto | To profile a data resource (including the establishment and operations of CIDACs and efforts to obtain high-quality administrative data for research). |
| Canada | Health | Canadian Forces Health Information System | Demographic and health data for members of the Canadian Forces, linked to census data and government water data. | Batsos | To investigate the association between municipal water fluoridation and dental health. |
| Welfare | Ontario Child Abuse and Neglect Data System (OCANDS) | Provincial linked data related to child welfare. | Fallon | To promote and demonstrate the policy and practice value of analysing longitudinal administrative data related to child welfare. | |
| Multiple | Institute for Clinical Evaluative Sciences (ICES) | Provincial linked health and other administrative data. | Schull | To profile an administrative data research network. | |
| Walker | To describe the linkage of the Indian Register database to the Ontario Registered Persons Database within the context of Indigenous data sovereignty principles. | ||||
| China | Health | Chinese Electronic Health Records Research in Yinzhou (CHERRY) | Regional, longitudinal health data. | Lin | To describe the methods for establishing an electronic health cohort in one region of China. |
| New Zealand | Health | Vascular Risk in Adult New Zealanders (VARIANZ) dataset | National, linked administrative health datasets. | Mehta | To profile a data resource. |
| Taiwan | Health | National Health Insurance Re-imbursement Database (NHIRD) | National, longitudinal health and prescription data. | Wang | To determine the risk of urothelial cancer associated with aristolochic acid-related Chinese herbal medicines among end-stage renal disease patients. |
| Critical Care Health Informatics Collaborative (CCHIC) | Multi-centre database of longitudinal health data from adult Intensive Care Units. | Harris | To profile a data resource (including creation and curation using a set of open-source tools). | ||
| Tissot | To evaluate the simulated performance of an algorithm for identifying patients for recruitment into a clinical trial. | ||||
| Cardiovascular disease research using linked bespoke studies and electronic records (CALIBER) | National linked health and other administrative data. | Denaxas | To profile a data resource. | ||
| UK | Health | Farr Institute | National health data. | Hemingway | To profile a data science research institute. |
| National Joint Registry | National health data related to joint replacement surgery. | Porter | To profile a data resource. | ||
| No name specified | Research database developed by one adult Intensive Care Unit. | McWilliams | To profile a data resource (including creation and curation). | ||
| Viral Hepatitis Central Data Repository | Multicentre database of health data. | Smith | To describe the development of a pipeline to collate electronic clinical data for viral hepatitis research. | ||
| Multiple electronic primary care databases | National health data related to primary care. | Springate | To describe an algorithm for extracting information from electronic health records. | ||
| Multiple | The Secure Anonymised Information Linkage (SAIL) Databank | National linked health and other administrative data. | Atkinson | To develop and validate an algorithm for determining smoking status and behaviour over the life course. | |
| Lyons | To describe the creation of an electronic cohort (the Wales Multimorbidity e-Cohort (WMC)). | ||||
| Food pricing | Administrative Data Research Northern Ireland | National linked health and other administrative data. | O'Reilly | To profile an administrative data research network. | |
| Food DB | Longitudinal data related to food and drink products available in online supermarkets. | Bhatnagar | To compare product availability, nutritional information, front-of-pack labelling, price and price promotions for food and drink products between physical and online supermarkets. | ||
| US | Health | The Flatiron Health dataset | Longitudinal electronic health records data related to cancer patients from practices from different regions in the US. | Abernethy | To describe overall survival with current first-line treatment for patients presenting with stage IV non-small cell lung cancer. |
| Li | To examine the management patterns and outcomes of patients with epidermal growth factor receptor tyrosine kinase inhibitors in non-small-cell lung cancer. | ||||
| Epic electronic health record platform | Electronic health records in a large tertiary paediatric healthcare system in Southern California. | Bush | To gather the perspectives of physicians and surgeons on structured data entry in electronic medical records. | ||
| Epic electronic health record platform | Electronic health records in a large healthcare system in Ohio. | Milinovich | To profile a data resource. | ||
| Optum Labs database | Multicentre database of health and insurance claims data. | Wallace | To profile a data resource. | ||
| Commercial Claims Database | Longitudinal health insurance claims from 3 of the largest insurers in the US. | Newman | To profile a data resource. | ||
| Higher education | Database for Research on Academic Medicine (DREAM) | Undergraduate and graduate medical education outcomes data from one university. | Wilhite | To profile a data resource (including creation and curation). | |
| Injury surveillance | National Football League (NFL) Injury Surveillance Program | Linked health and sports-related data for professional NFL players. | Dreyer | To profile a data resource (including creation and curation). | |
| Patents | US Patent Assignment Dataset (UPAD) and Patent Examination Research Dataset (PatEx) | National, longitudinal, relational databases of patents applications and patents in the US. | Graham | To profile a data resource. | |
| Graham | To profile a data resource. | ||||
| US Patent Assignment Dataset (UPAD) | National, longitudinal, relational database of patents applications and patents in the US. | Li | To analyse the effects of pharmaceutical company characteristics on the timing of drug patent purchases. |
UK = United Kingdom; US = United States.
Figure 2: Key characteristics of research-ready administrative data