Introduction
Method
Results
Region/nation | Database | Mental health specific? | Description | Example publication |
---|---|---|---|---|
Middle East, Asia and Australasia | ||||
Middle East | Clalit Health Services | No | National. Covers 55 % Israeli population | Hammerman et al. [77] |
Israeli Psychiatric Case register | Yes | National. Secondary care psychiatry. Since 1950 | Lichtenberg et al. [78] | |
Far East | Hong Kong Hospital Authority | No | Covers 95 % secondary care in HK | Cheung et al. [79] |
Seoul National University | No | Local secondary care | Park et al. [80] | |
Taiwan National Health Insurance Database | No | National. Covers 96 % Taiwan population | Chen et al. [81] | |
Australia | Mental Health National Outcomes and Casemix | Yes | National. Secondary care psychiatry. Since 2003 | Burgess et al. [47] |
Western Australia admin | No | Regional (3.7 m people). Mental health sub-group. Up to 50 years data | Lawrence et al. [82] | |
Multi-country (Asia) | Pan-Asian SNP Consortium (HUGO) | No | Research database | Ngamphiw et al. [83] |
Europe | ||||
Western Europe | Asturias Cumulative Psychiatric Case Register (RACPAS) | Yes | Spain. Regional (1 m people). Secondary care psychiatry | Bobes et al. [84] |
Gmünder ErsatzKasse (GEK) | No | Germany. National. Large health insurer (6 % population, around 5 m people) | Sauer et al. [85] | |
German Research Network on Depression/DGPPN-BADO | Yes | BADO is national minimum data set for inpatient psychiatry. Depression network from 10 heterogeneous hospitals | von Wolff et al. [48] | |
Health Search Database | No | Italy. National. Primary care data (1.5 % population, around 1 m people) | Sultana et al. [86] | |
Marseille/French National Health Insurance Fund | No | Regional. Prescription data | Bocquier et al. [87] | |
Regensberg Hospital/DGPPN-BADO | Yes | Germany. Local. BADO is minimum data set from psychiatric inpatients | Frick et al. [88] | |
South Verona Community-Based Mental Health Service | Yes | Italy. Local. Secondary care psychiatry. 25 years+ of data | Donisi et al. [89] | |
Zurich/Swiss psychiatric case register | Yes | Regional. Secondary care psychiatry. 25 years+ of data | Lay et al. [90] | |
United Kingdom | Clinical Practice Research Data link (CPRD), formerly General Practice Research Database (GPRD) | No | National sample primary care providers. Some data open access (NIHR.ac.uk) | Margulis et al. [91] |
Clinical Record Interactive Search (CRIS) | Yes | Local secondary care psychiatry. South London and Maudsley Biomedical Research Centre (SLaM BRC) Case Register. 200,000+ people | Perera et al. [20] | |
Generation Scotland | No | Regional (Scotland). Research database. Family based cohort | Fernandez-Pujals et al. [92] | |
GRiST | Yes | Multiple locations, primary and secondary care psychiatry. Mental health risk assessment software | Buckingham [50] | |
Public Health England Mental Health Dementia and Neurology Intelligence Network | Yes | Regional (England). 22 ‘indicators’ from mixed administrative sources | Wilkinson et al. [93] | |
QResearch GP database | No | National sample primary care providers. 600 practices, around 12 m people | Coupland et al. [94] | |
The Health Improvement Network (THIN) | No | National sample primary care providers. 10 m people, broadly representative of population | Osborn et al. [36] | |
UK Biobank | No | National sample 500,000 volunteers. Research database | Smith et al. [58] | |
Secure Anonymised Information Linkage (SAIL) | No | Linked data from a range of healthcare sources covering Wales (population 3 m) | John et al. [95] | |
PsyCymru | Yes | An e-cohort of around 12,000 psychosis cases in Wales linked to SAIL data | Lloyd et al. [96] | |
Scandinavia | Danish Psychiatric Central Research Register | Yes | National. Secondary care psychiatry with extensive national linkage | Munk-Jorgensen and Ostergaard [97] |
deCODE Iceland | No | National opt-in commercial/research database | Thorgeirsson et al. [98] | |
Dutch National Survey in General Practice | No | National sample primary care providers | Maas et al. [99] | |
Finnish Hospital Discharge Register | No | National. Inpatients. Linked to other national registers | Haukka et al. [100] | |
Mid-Netherlands Psychiatric Care Register | Yes | Regional—Utrecht and surrounding areas, population 760 k. Secondary care psychiatry | Braam et al. [101] | |
Norwegian Patient Register | Yes | National. Secondary care psychiatry. Linked to other national registers | Evensen et al. [102] | |
Odense University Pharmaco-epidemiologic Database | No | Denmark. Local prescription database with linkage | Hansen et al. [103] | |
Eastern Europe | Hungarian National Health Insurance Fund | No | National. Prescription-with-indication database | Katona et al. [104] |
Multi-country (Europe) | European Observatory on Health Systems and Policies | No | Health services. Produces country-based reports | Dlouhý and Barták [105] |
European Prevention of Alzheimer’s Dementia (EPAD) project | Yes | A European Innovation Medicines Initiative | Ritchie et al. [106] | |
European Autism Interventions | Yes | A European Innovation Medicines Initiative | Murphy and Spooren [107] | |
Nordic population-based prescription database | No | Pharmaco-epidemiology using databases from five countries | Zoëga et al. [108] | |
PROTECT-EU | No | Pharmaco-vigilence using databases in three countries | Requena et al. [109] | |
Refinement | Yes | Mental health services. Population data and service inventory | Sfetcu et al. [56] | |
America | ||||
Canada | Canadian Chronic Disease Surveillance System (CCDSS) | Yes | National. Will specifically monitor excess mortality in people with psychiatric diagnosis | Lesage et al. [110] |
Canadian Primary Care Sentinel Surveillance Network | No | National sample primary care providers | Wong et al. [35] | |
OntarioMD | No | Regional, primary care providers | Hwang et al. [111] | |
Ontario Mental Health Reporting System | Yes | Regional, based on interRAI MH dataset for psychiatric inpatients | Perlman et al. [112] | |
Saskatchewan Health Databases | No | Regional, multisource. 25 years+ of data | Meng et al. [113] | |
USA | 23andMe | No | National. Commercial genotyping database, self-report | Tung et al. [114] |
Agency for Healthcare Research and Quality (AHRQ) Healthcare Cost and Utilisation Project (HCUP) | No | National sample hospital care providers. Databases and software through Federal-State-Industry partnership | Smith et al. [115] | |
Alzheimer’s Disease Genetic Consortium | Yes | Distributed network of sample of healthcare providers | McDavid et al. [116] | |
CDC data surveillance systems, including national ambulatory care survey | No | National. A number of monitoring systems and surveys | Olfson et al. [117] | |
Data QUEST | No | Sample of 15 primary care providers in five states | Estiri et al. [118] | |
Electronic medical records and genomics network (eMERGE) | No | Distributed network of five leading academic medical centres for biobanking, includes Alzheimer’s cohorts | Kho et al. [40] | |
Group Health Research Institute (GHRI) | No | Healthcare management organization (HMO). HMO network member | Lin et al. [119] | |
Health Plan Employer Data and Information Set (HEDIS) | No | National. Set of performance measures used by most health plans in USA. Managed by National Committee for Quality Assurance (NCQA) | Clark et al. [120] | |
Informatics for integrating biology and the bedside (i2b2) | No | Local secondary care. Biobank affiliated with Harvard Medical Schools | Perlis et al. [26] | |
U.S. Food and Drug Administration (FDA) Mini-Sentinel, including Innovation in Medical Evidence Development and Surveillance (IMEDS) | No | National (currently sample) medication-based database, aiming to create active monitoring system | Raebel et al. [121] | |
Kaiser Permanente, including KP Research Program on Genes, Environment and Health (RGEH) | No | Regional sample. HMO based in Northern California, 3.4 m insured | Young et al. [122] | |
Mayo Clinic | No | Local secondary care provider. Based in Minnesota, also contributes to Olmsted County/Rochester projects | Sohn et al. [123] | |
MarketScan Research Database | No | National sample. Commercial claims and encounters database from mix of providers | Watkins et al. [124] | |
Medicaid & Medicare data | No | National sample. Government reimbursed healthcare activity. Data accessed through CMS.gov or a variety of platforms, including MarketScan and HEDIS | Medicaid Medical Directors Learning Network [125] | |
Mental Health Research Network at Health Care Systems Research Network, formerly HMO research network | No | National sample. Distributed network of up to 17 HMOs with virtual data warehouse. Potentially 11 m population in 11 states | Ahmedani et al. [126] | |
Multiparameter Intelligent Monitoring in Intensive Care (MIMIC) | No | Local critically ill. ICU patients in Massachesets teaching hospitals | Ghassemi et al. [127] | |
National Prescription Audit (NPA) and National Disease and Therapeutic Index (NDTI) | No | National sample. Commercial medication-focused databases from IMS Institute for Healthcare Informatics | Alexander et al. [128] | |
New York Presbytarian | No | Local. Single hospital. 30 years+ of data | Melamed et al. [129] | |
Palo Alto Medical Foundation (PAMF) | No | Regional. Single HMO. HMO network member | Goyal et al. [130] | |
Partners Healthcare | No | Regional. Single HMO. Feeds into i2b2 | Castro et al. [131] | |
PharMetrics Patient-Centric Database, now merged with IMS databases | No | National sample. Pharmacy and encounter data 14 m people | Berger et al. [132] | |
Penn Longitudinal Database | Yes | Regional. Public mental health use (secondary care) in Philadelphia. Also part of collaborative perinatal project | Connolly Gibbons et al. [133] | |
Shared Health Information Network (SHRINE) | No | Multiple sites. Secondary care. Collaboration between Harvard and University of California hospitals | Kohane [134] | |
Scalable Partnering Network (SPAN) for Comparative Effectiveness Research (CER) | No | National sample. Project providing linkage between nine HMOs and two community partners | Toh et al. [38] | |
Stanford Translational Research Integrated Database Environment (STRIDE) | No | Local. Data from healthcare provider. Data on 2 m people since 1994 | Raj et al. [135] | |
Texas Department of Criminal Justice | No | Local database of prisoners | Baillargeon et al. [136] | |
University of Michigan Health System data warehouse | No | Local secondary healthcare provider. Uses Electronic Medical Record Search Engine (EMERSE) | Hanauer et al. [137] | |
Vanderbilt University Biorepository—BioVU | No | Local secondary care provider. Genomics, select health metrics and EHR | Crawford et al. [138] | |
Veterans Affairs Database | No | National specialist provider for veterans. Provides healthcare for aprox 14 m, has smaller biobank | Bauer et al. [139] | |
Multi-continent | ||||
Aetionomy | Yes | Neurodegenerative diseases. Under European Innovative Medicines Initiative, aligned with EPAD in Europe and GAP in North America | Hofmann-Apitius et al. [140] | |
Asian Pharmacoepidemiology Network (AsPEN) | No | Eight cohorts in distributed network model: six countries, four continents, 200 m people | Pratt et al. [141] | |
Enhancing NeuroImaging Genetics through Meta-Analysis (ENIGMA) | Yes | Sets of research cohorts. 70 institutions taking part | Thompson et al. [60] | |
Global Burden of Disease (GBD)/WHO mental health survey | No | Estimates of morbidity for 187 countries | Whiteford et al. [57] | |
Genetic Consortium for Anorexia Nervosa | Yes | Up to 30 datasets for GWAS | Reichborn-Kjennerud et al. [142] | |
Health Care Quality Indicators (HCQI) for OECD countries | No | Comparative data on national health systems | Moran and Jacobs[143] | |
IMS Prescribing Insights database | No | Medication-based database. Presence in 30 countries | Wong et al. [144] | |
Psychiatric Genomic Consortium | Yes | Has a number of working groups for specific disorders and cross-disorder group | Cross-Disorder Group of the Psychiatric Genomics [59] | |
International Genomics of Alzheimer’s Project (I-GAP) | Yes | Including existing genetic consortia and other cohorts | Lambert et al. [145] | |
Sequenced Treatment Alternatives to Relieve Depression (STAR*D) | Yes | Whilst this international study was not “big data”, in terms of using hybrid EHR and manual methods, it develops techniques to be used for observational research in big data | Garriock et al. [146] | |
WHO Global Health Observatory Data Repository | No | Special topics covered, including mental health and suicide | WHO [147] |
Disorder (% of papers) | Descriptive epidemiology and service use | Risk factors, comorbidities and genetics | Treatment and prognosis | Physical health, pregnancy, mortality |
---|---|---|---|---|
All disorders (10 %) | Manson [148] Heggestadet al. [149] | Roque et al. [150] Cross-Disorder Group of the Psychiatric Genomics [59] | Donisi et al. [89] | Perini et al. [151] Lawrence et al. [82] |
Severe mental illness (5 %) | Lyalina et al. [152] | Kyaga et al. [153] Steinberg et al. [154] | Perlman et al. [112] | Matheson et al. [155] Wangel et al. [156] |
Dementia (9 %) | Knopman et al. [24] Kosteniuk et al. [157] | Exalto et al. [158] Lambert et al. [145] | van den Bussche et al. [159] | Rait et al. [160] |
Substance use disorder (2 %) | Bonn-Miller et al. [161] | Nesvåg [162] | Mark et al. [163] | |
Schizophrenia (6 %) | Okkels et al. [164] Evensen et al. [102] | Harper et al. [165] | Stroup et al. [166] | Gal et al. [167] Vigod et al. [168] |
Bipolar disorder (2 %) | Castro et al. [169] | Schaefer et al. [170] | Hayes et al. [171] | Lee and Lin [172] |
Depressive disorders (11 %) | Hoffmann et al. [173] Wong et al. [35] | Hanauer et al. [137] Ul-Haq et al. [174] | Morkem et al. [34] Musliner et al. [175] | Lin et al. [119] |
Anxiety and somatoform disorders (2 %) | Walters et al. [75] | Lacourt et al. [176] | Sandelin et al. [177] | Frayne et al. [178] |
Eating disorders (1 %) | Micali et al. [179] | Reichborn-Kjennerudet al. [142] | ||
Post-partum mental disorders (2 %) | Polachek et al. [180] | Goyal et al. [130] | ||
Intellectual disabilities (1 %) | Sprung et al. [181] | Alexander et al. [182] | ||
Autism/Autism Spectrum Disorder (ASD) (6 %) | Kohane [134] | Hsu et al. [183] Clarke et al. [184] | Wong et al. [144] Murphy and Spooren [107] | |
Other neuro-developmental disorders (4 %) | Surén et al. [185] | Leivonen et al. [186] | Hoffmannet al. [187] |
Topic (% of papers) | Example papers |
---|---|
Medication prescription 6 % | Sultana et al. [86] John et al. [95] Abdullah-Koolmees et al. [188] Hartz et al. [189] |
Medication safety and adverse drug reactions 13 % | Chung et al. [190] Eriksson et al. [191] Castro et al. [131] |
Medication safety in older adults | Hwang et al. [111] Huybrechts et al. [54] |
Medication safety during pregnancy | Hviid et al. [192] Palmsten et al. [193] |
Suicide and self-injury 5 % | Stewart et al. [194] Simon et al. [195] |
Mental health admissions 4 % | Frick et al. [88] Bardach et al. [196] |
Patient characteristics 4 % | Koopmans et al. [197] Oram et al. [198] |
Mental Health Services Quality 3 % | Moran and Jacobs [143] |