Thematic list of projects using linked data relating to Aboriginal and Torres Strait Islander people

This report contains an alphabetical listing and description of past (published since 1991), current and planned data linkage studies relating to Aboriginal and Torres Strait Islander people. The publication provides a brief listing of: the name of the projectthe names of the investigatorsthe date of the studythe jurisdiction where the study is basedthe datasets used in the studythe core issue, or theme, of the studythe method of analysisthe method or algorithms used or intended to be used to derive Indigenous status information, if required. This list should be read in conjunction with the National best practice guidelines for data linkage activities relating to Aboriginal and Torres Strait Islander People and its online attachment, Report on the use of linked data relating to Aboriginal and Torres Strait Islander people. The list was compiled from consultations with jurisdictional departments and researchers who use linked data relating to Aboriginal and Torres Strait Islander Australians and from reports and academic journal articles that describe the analysis of linked data relating to Aboriginal and Torres Strait Islander Australians

Prognostic factors related to sequelae in childhood bacterial meningitis: Data from a Greek meningitis registry

<p>Abstract</p> <p>Background</p> <p>Bacterial meningitis (BM) is a life-threatening disease, often related with serious complications and sequelae. Infants and children who survive bacterial meningitis often suffer neurological and other sequelae.</p> <p>Methods</p> <p>A total of 2,477 patients aged 1 month to 14 years old hospitalized in a Children's Hospital in Greece diagnosed with acute bacterial meningitis were collected through a Meningitis Registry, from 1974 to 2005. Clinical, laboratory and other parameters (sex, age, pathogen, duration of symptoms before and after admission) were evaluated through univariate and multivariate analysis with regard to sequelae. Analysis of acute complications were also studied but not included in the final model.</p> <p>Results</p> <p>The rate of acute complications (arthritis and/or subdural effusion) was estimated at 6.8% (152 out of 2,251 patients, 95%CI 5.8-7.9) while the rate of sequelae (severe hearing loss, ventriculitis, hydrocephalus or seizure disorder) among survivors was estimated at 3.3% (73 out of 2,207 patients, 95%CI 2.6-4.2). Risk factors on admission associated with sequelae included seizures, absence of hemorrhagic rash, low CSF glucose, high CSF protein and the etiology of meningitis. A combination of significant prognostic factors including presence of seizures, low CSF glucose, high CSF protein, positive blood culture and absence of petechiae on admission presented an absolute risk of sequelae of 41.7% (95%CI 15.2-72.3).</p> <p>Conclusions</p> <p>A combination of prognostic factors of sequelae in childhood BM may be of value in selecting patients for more intensive therapy and in identifying possible candidates for new treatment strategies.</p

Towards early recognition of hypogammaglobulinaemia:New insights into clinical presentation patterns and screening tools

Publiekssamenvatting Herhaaldelijke infecties van de luchtwegen komen veel voor; een onderliggende afweerstoornis is zeldzaam. Dat maakt het lastig om patiënten bij wie een afweerstoornis een rol zou kunnen spelen te onderscheiden van patiënten waarbij dit niet het geval is. Als de infecties heel vaak optreden of afwijkend verlopen, moet aan een onderliggende afweerstoornis worden gedacht. Van alle afweerstoornissen komt een tekort aan antistoffen - ook wel immuunglobulinen genoemd - het meest voor (primaire antistof deficiëntie, PAD), maar dit is nog steeds erg zeldzaam. De bekendste PAD is ‘common variable immunodeficiency’ (CVID). Deze diagnose wordt gesteld als er meerdere klassen van antistoffen verlaagd zijn, meestal immuunglobuline A (IgA) en immuunglobuline G (IgG) of soms verlaagd immuunglobuline M (IgM) en de patiënt na vaccinatie niet in staat is tot het aanmaken van antistoffen. Echter, veel meer patiënten met PAD voldoen niet precies aan deze criteria. Wij verwijzen naar deze vorm van PAD als ‘unclassified antibody deficiency’ (unPAD), een afweerstoornis die wordt beschouwd als milder. De kennis over deze groep afweerstoornissen is gering. De meeste artsen die niet gespecialiseerd zijn in afweerstoornissen, denken niet aan een onderliggende afweerstoornis bij patiënten met herhaaldelijke ‘normale’ infecties en/of chronische vermoeidheid. De diagnose wordt bij deze patiënten daarom vaak pas laat gesteld, met als gevolg dat er vaak al onherstelbare schade is ontstaan, zoals verwijde en ontstoken luchtwegen. Daarom is het belangrijk om PADs tijdig te herkennen. Hoofddoelen van deze thesis zijn: 1) PADs eerder herkennen, en 2) meer inzicht krijgen in de klachten waarmee PAD-patiënten bij de arts komen voordat de diagnose wordt gesteld. Dit proefschrift heeft aangetoond dat patiënten met ‘mildere’ PADs, vaak genegeerd worden in de literatuur en vaak niet volledig geanalyseerd of nauwkeurig beschreven worden. Het is echter belangrijk om ook deze patiëntgroep op tijd te herkennen en behandelen, omdat bij unPAD vaak ook andere ziekten voorkomen; 44% van de patiënten in ons algemeen ziekenhuis cohort had al schade aan de luchtwegen bij diagnose en hun kwaliteit van leven was verminderd op alle domeinen. In onze meta-analyse tonen we aan dat met de huidige waarschuwingssignalen, 25% van alle CVID-patiënten gemist worden. Naast deze medische aspecten kunnen ook niet-medische aspecten helpen om patiënten met PAD te onderscheiden van de patiënten met chronisch vermoeidheid syndroom of onschuldige infecties. Dit proefschrift heeft namelijk aangetoond dat patiënten met PAD hun klachten neigen te negeren en zoveel mogelijk doorgaan met hun normale leven. Dit verschilt van bijvoorbeeld patiënten met chronisch vermoeidheid syndroom, die vaker gebruik maken van passieve coping strategieën. Tenslotte toont ons proefschrift de bruikbaarheid van een screeningstest (23-valente Pneumokokken IgG test) aan om PAD eerder op te sporen. Onderzoek van een groter unPAD cohort is belangrijk om onze resultaten te bevestigen en klinische presentatie patronen beter in kaart te brengen. Hiervoor zal gebruik gemaakt worden van een reeds bestaande Europese patiëntenregistratie die opgezet is door de European Society for Immunodeficiencies (ESID online Database). Een groot cohort maakt daarnaast ook onderscheid van potentiele subgroepen mogelijk, waardoor bepaald kan worden welke patiëntencategorieën risico hebben op ernstigere complicaties en dus meer strikte follow-up en/of andere behandelingen nodig hebben. Om deze reden is de Europese multi-centrum ‘unPAD study’ ontwikkeld, waarbij gebruik wordt gemaakt van de ESID online Database en waarvan de dataverzameling nog steeds loopt

Logic specification for ACIP recommendations

In 2019, approximately 96% of U.S. children under the age of six participated1 in an Immunization Information System (IIS), an increase from 82% in 2010. 2 Adolescent participation in 2019 was 82%, up from 60% in 2010. Adult participation in 2019 increased to 60% up from 22% in 2010. Given this widespread IIS participation, it is important that each patient\u2019s immunization record is consistent and up to date within an IIS.Health Information Systems (HIS) \u2013 which can include Health Information Exchanges (HIEs), IIS, Electronic Health Records (EHRs), and others \u2013 provide healthcare providers with immunization evaluation and forecasting tools designed to automatically determine the recommended immunizations needed when a patient presents for vaccination. These recommendations are developed by the Advisory Committee on Immunization Practices (ACIP). ACIP is a federal advisory committee responsible for providing expert external advice and guidance to the Director of the Centers for Disease Control and Prevention (CDC) and the Secretary of the U.S. Department of Health and Human Services (DHHS) on use of vaccines and related agents for control of vaccine-preventable disease in the United States. Recommendations include but are not limited to age for vaccine dose administered, number of doses, dosing interval, risk factors, precautions, and contraindications.After ACIP recommendations are published, technical and clinical subject matter experts (SMEs) work to interpret and integrate them into their evaluation and forecasting engines. An example of an evaluation and forecasting engine is a tool an IIS might use to alert a physician that a presenting child is overdue for a Measles, Mumps, and Rubella (MMR) vaccination. New ACIP schedule changes are currently communicated only through clinical language, in publications like the Morbidity and Mortality Weekly Report (MMWR) and the Epidemiology and Prevention of Vaccine-Preventable Diseases ("The Pink Book"). The translation of that clinical language into technical logic that is processed within evaluation and forecasting engines is a time-consuming and complex process that happens mostly independently within the different HIS. Due to the challenge of interpreting clinically written ACIP recommendations, clinical decision support (CDS) engine outputs often vary and do not always match the expectations of clinical SMEs.logic-spec-acip-rec-4.3.pd

Advisory Committee on Immunization Practices (ACIP) summary report : June 25-26, 2014, Atlanta, Georgia

ACIP Meeting Minutes June 25-26, 2014Publication date from document properties.min-2014-06.pdf2014607

Evaluation of vaccine effectiveness in older adults using routinely collected data: a quasi-experimental approach

Vaccination of older adults is a key component of public health policy, but further evidence is required to understand its effectiveness in practice. Electronic health records (EHRs) present a potential alternative to the gold-standard evidence of clinical trials, particularly for populations, such as older adults, who may be under-represented in trials due to ethical and practical constraints in recruitment. Importantly, EHRs also allow the real-world study of an intervention as it is delivered in practice, and its effect in clinically important sub-groups. However, EHRs are not purposed to collect informaton on confounders, which may bias results from the analyisis of routinely-collected data. This motivated my review of quasi-experimental (QE) methods as a means of indirectly adjusting for confounding. My published methodological review found that the longitudinal information available in EHRs offer many opportunities for mitigating against confounding bias, but many methods may be under-utilised. The prior event rate ratio (PERR) and its alternative formulation, described under the Pairwise framework, is a recently developed method that utilises longitudinal information. This before-and-after approach can be applied to rate and survival data, allowing an easy comparison to many trial results. The data on vaccination in UK older adults was also the basis for further study of the performance and limitations of the method beyond exisiting simulation studies. Through comparison to weighted regression, I demonstrated how the source of confounding and robustness of the results could be explored. In a novel application of the PERR and Pairwise methods to interactions, I investigated the effectiveness of the pneumococcal vaccine in older patients, and found evidence for an increase in effectiveness with age across the years of policy implementation, 2003-2005. In my investigation of the influenza vaccine in annual cohorts from 1997 to 2011, I found consistent evidence of a moderately protective effect against myocardial infarction, but that this may decrease with age. The evidence also indicated a protective effect against influenza itself, but no age trend in its effectiveness was detected

Applied Epidemiology of Vaccine Preventable Diseases and Outbreaks in New South Wales

The National Centre for Immunisation Research and Surveillance (NCIRS) is located within the Kids Research Institute (KRI) at Westmead Children’s Hospital. It is somewhat hidden away from the children’s hospital, and no easier to navigate internally once you find the building on your first day. During my two years there, I was part of the Coverage, Evaluation and Surveillance (CES) Program Stream, which met monthly to discuss achievements and deliverables of the group. As an active member, I was encouraged to keep the group up to date on my progress throughout my MAE journey. The Western Sydney Public Health Unit (WSPHU) is located at Cumberland Hospital adjacent to Westmead Children’s Hospital. I spent two weeks at the PHU, observing and assisting wherever possible. I helped with a measles outbreak, including contract tracing, interviewing people, maintaining clinical line lists, informing high-risk people of a measles-clinic and assisting medical staff during the running of the measles-clinic. During this emergency response, all high-risk people (including pregnant mothers and newborn babies) were contacted and provided with appropriate prophylaxis to prevent illness. During my time there, I was also very fortunate to lead a Salmonella outbreak investigation (Chapter 3). The Communicable Diseases Branch (CDB) is located in the Ministry of Health building in North Sydney. I spent almost four months there conducting the epidemiological investigation (Chapter 4). During my time at the CDB, I attended staff meetings, afternoon debriefs, surveillance meetings and an in-house emergency response workshop. I was also very fortunate to be funded to attend the OzFoodNet whole genome workshop in Melbourne. I also assisted with two Legionella outbreaks, where I helped to maintain line-lists and the Sit-Rep, and attended the afternoon meetings, where I was asked to take, transcribe and distribute minutes of meeting from time to time. I truly enjoyed my experience at the CDB, NSW Health. 1.2 Summary of my public health experience 1.2.1 Analysis of a public health dataset (Chapter 2) In November 2005, hepatitis A vaccine was funded under the Australian National Immunisation Program for Indigenous children aged 12-24 months in the targeted jurisdictions of Queensland, South Australia, Western Australia and the Northern Territory. I reviewed the epidemiology of hepatitis A from 2000-2014 using data from the Australian National Notifiable Diseases Surveillance System, the National Hospital Morbidity Database, and Australian Bureau of Statistics causes-of-death data. Overall, the national hepatitis A immunisation program has had a significant impact in the targeted population with relatively modest vaccine coverage, with evidence of substantial herd protection effects. 1.2.2 Outbreak Investigation (Chapter 3) During May 2015, an increase in Salmonella Agona cases was reported from western Sydney, Australia. I present the public health actions used to investigate and control this increase. A descriptive case-series investigation was conducted. Six outbreak cases were identified; all had consumed cooked tuna sushi rolls purchased within a western Sydney shopping complex. Onset of illness for outbreak cases occurred between 7 April and 24 May 2015. Salmonella was isolated from food samples collected from the implicated premise and a prohibition order issued. No further cases were identified following this action. In addition, this outbreak investigation also demonstrated genomics-enhanced public health action, where whole genome sequencing significantly enhanced the resolution of the epidemiological investigation. 1.2.3 Epidemiological investigation (Chapter 4) Among adults, pneumococcal pneumonia causes significant mortality and morbidity. While the funding of polysaccharide pneumococcal vaccines have reduced the incidence of invasive pneumococcal disease (IPD) in older people, uncertainty remains regarding their effectiveness against reducing the hospitalisation rate due to community acquired pneumonia. In this study I use linked-data to document that approximately one in seven hospital admissions coded for pneumococcal pneumonia in older people of NSW were due to invasive pneumococcal disease. The remaining six hospital admissions were presumptive non-invasive pneumococcal pneumonia cases. I also documented significant declines in the rate and severity of hospitalisations over time due to presumptive non-invasive pneumococcal pneumonia. The pneumococcal polysaccharide vaccine that was used for adults has not been consistently shown to be effective against non-invasive pneumococcal pneumonia hospitalisations, while the conjugate vaccine used in the children program has provided substantial indirect protection against IPD to adults. The results presented here could impact on cost-effectiveness of pneumococcal vaccine programs in Australia. 1.2.4 Evaluation of a surveillance system (Chapter 5) The AusVaxSafety enhanced active surveillance system was established in 2014 and has two main functions. Firstly, to gather near real-time data of AEFI following seasonal influenza vaccination of children aged between six months and five; secondly, to collate, interpret and disseminate these results in near real-time to stakeholders and the public. AusVaxSafety was evaluated to assess the usefulness of the information collected; identify strengths and limitations; and provide feedback to stakeholders regarding recommendations to the system. During the 2015 influenza season, the AusVaxSafety successfully demonstrated, in real-time, that influenza vaccines registered for used in children aged six months to five years were safe, well tolerated, and that the AEFIs experienced were within expected ranges

Immunization messaging

Release 1.5 for commentImmunization Information Systems (IIS) are centralized population based repositories of immunization related information. They receive and share data on individual clients/patients1 with a number of other systems, including Electronic Health Record systems (EHR-S). Health Level Seven (HL7) is a nationally recognized standard for electronic data exchange between systems housing health care data. The HL7 standard is a key factor that supports this two-way exchange of information because it defines a syntax or grammar for formulating the messages that carry this information. It further describes a standard vocabulary that is used in these messages. It does not depend on specific software, that is, it is platform independent.This document represents the collaborative effort of the American Immunization Registry Association (AIRA) and the Centers for Disease Control and Prevention (CDC) to improve inter-system communication of immunization records. The effort has received input from the National Institute of Standards and Technology (NIST) to improve the capacity to test conformance with this Implementation Guide. In addition, this Guide addresses a need to specify usage requirements for data elements that are not included in the standard HL7 usage designations. This implementation guide replaces the Implementation Guide for Immunization Data Transaction Using Version 2.3.1 of the HL7 Standard Protocol, and previous versions of this Guide. It is based on HL7 Version 2.5.1, as published by the HL7 organization (www.hl7.org). In addition, it pre-adopts a number of features of HL7 Version 2.7.1, such as data types and usage.As HL7 has developed and published new versions of the standard, it has sought to maximize the ability of implementations, based on newer versions to be able to accept messages from earlier versions. Based on this, we anticipate that faithful implementations of this Guide will be able to accept most immunization messages based on the 2.3.1 Guide. Note that variations in current 2.3.1 interfaces increase the risk that faithful 2.5.1 implementations will encounter problems with 2.3.1 messages.201