Evaluation of the Western Australian population based data linkage Intellectual Disability Exploring Answers (IDEA) surveillance system

IntroductionThe IDEA system is a population-based data linkage system for intellectual disability (ID), which combines data from two government departments. Due to recent policy changes the future of the IDEA system is unknown. Understanding the IDEA system's strengths and limitations will provide data custodians with the opportunity to re-design the system. Objectives and ApproachAn evaluation of the IDEA surveillance system was undertaken to assess the quality, efficiency and usefulness of the system. The primary objectives were to evaluate systematically and objectively the attributes of the system and provide recommendations to data custodians and stakeholders to strengthen the surveillance system. The evaluation was based on the methods from the 2001 U.S. Centers for Disease Control and Prevention guidelines on evaluation of public health surveillance systems. We assessed the following system attributes: usefulness, simplicity, flexibility, data quality, acceptability, representativeness, timeliness, and stability. This was completed by process observation, semi-structured interviews and data analysis. ResultsOur results found the IDEA system was flexible, acceptable, representative, timely and stable. Given data linkage process and maintaining confidentiality the data linkage process was considered relatively simple. We compared individuals in the IDEA surveillance system to a sub-group of individuals, cerebral palsy with ID, to the mandatory reporting surveillance system WARDA-CP. There were 582 individuals identified in the WARDA-CP surveillance system as having cerebral palsy and ID. Of those identified 501 (86.1%) were also in the IDEA database and 81 (13.9%) were not. There were little differences in WARDA-CP cases that were not identified in the IDEA system between Indigenous status, sex and place of residence. Conclusion/ImplicationsThe IDEA system has successfully been used to understand prevalence rates and inform resource allocation. Advocacy organisations could play an important role in the sustainability of the system. Additional variables or enhanced surveillance for functional capacity could strengthen the system and provide important information to inform policy and practice.

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Assessing the quality, efficiency and usefulness of the Western Australian population-based Intellectual Disability Exploring Answers (IDEA) surveillance system: a surveillance system evaluation

BMJ Open ◽

10.1136/bmjopen-2018-026003 ◽

2019 ◽

Vol 9 (10) ◽

pp. e026003

Author(s):

Natalie A Strobel ◽

Jenny Bourke ◽

Helen Leonard ◽

Alice Richardson ◽

Karen M Edmond ◽

...

Keyword(s):

Cerebral Palsy ◽

Intellectual Disability ◽

Data Quality ◽

Surveillance System ◽

Secondary Data ◽

Primary Objective ◽

Government Support ◽

Full Potential ◽

Indigenous Status ◽

Western Australian

ObjectivesOur overall aim was to evaluate the Western Australian Intellectual Disability Exploring Answers (IDEA) surveillance system. The primary objective was to evaluate the attributes of the system. The secondary objective was to provide recommendations to data custodians and stakeholders to strengthen the system.MethodThe IDEA system was evaluated using process observation, interviews and secondary data analysis of system attributes: usefulness, simplicity, data quality, acceptability, representativeness, timeliness and stability. 2001 US Centers for Disease Control and Prevention guidelines were used.ResultsWe found that the IDEA system was useful, simple, flexible, acceptable, representative, timely and stable. We compared individuals from the IDEA system (n=10 593) with those with cerebral palsy and intellectual disability (ID) (n=582) from another surveillance system. Of the 582 with cerebral palsy and ID, 501 (86.1%) were in the IDEA system and 81 (13.9%) were not. In total, 0.7% of cases (81/10674) with ID were not identified in the IDEA system. There were little differences in cases that were not identified in the IDEA system between Indigenous status, sex and place of residence.ConclusionsThe strengths of the IDEA system include having a high data quality resource contributing to national and international data on ID, strong government support and a dedicated management team. Output from studies linking to IDEA data have had major contributions to the international literature about ID. However, limited resources have prevented it from realising its full potential in relation to translational activities. The IDEA system is a valuable resource to address the needs of people living with ID.

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Effect of socioeconomic disadvantage, remoteness and Indigenous status on hospital usage for Western Australian preterm infants under 12 months of age: a population-based data linkage study

BMJ Open ◽

10.1136/bmjopen-2016-013492 ◽

2017 ◽

Vol 7 (1) ◽

pp. e013492 ◽

Cited By ~ 2

Author(s):

Natalie A Strobel ◽

Sue Peter ◽

Kimberley E McAuley ◽

Daniel R McAullay ◽

Rhonda Marriott ◽

...

Keyword(s):

Preterm Infants ◽

Data Linkage ◽

Population Based ◽

Linkage Study ◽

Socioeconomic Disadvantage ◽

Indigenous Status ◽

Western Australian

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High added value of a population-based participatory surveillance system for community acute gastrointestinal, respiratory and influenza-like illnesses in Sweden, 2013–2014 using the web

Epidemiology and Infection ◽

10.1017/s0950268816003290 ◽

2017 ◽

Vol 145 (6) ◽

pp. 1193-1202 ◽

Cited By ~ 9

Author(s):

A. PINI ◽

H. MERK ◽

A. CARNAHAN ◽

I. GALANIS ◽

E. VAN STRATEN ◽

...

Keyword(s):

Surveillance System ◽

Syndromic Surveillance ◽

Correlation Coefficients ◽

Health Agency ◽

Population Based ◽

Medical Advice ◽

Added Value ◽

Surveillance Systems ◽

Participatory Surveillance ◽

The Web

SUMMARYIn 2013–2014, the Public Health Agency of Sweden developed a web-based participatory surveillance system, Hӓlsorapport, based on a random sample of individuals reporting symptoms weekly online, to estimate the community incidence of self-reported acute gastrointestinal (AGI), acute respiratory (ARI) and influenza-like (ILI) illnesses and their severity. We evaluated Hӓlsorapport's acceptability, completeness, representativeness and its data correlation with other surveillance data. We calculated response proportions and Spearman correlation coefficients (r) between (i) incidence of illnesses in Hӓlsorapport and (ii) proportions of specific search terms to medical-advice website and reasons for calling a medical advice hotline. Of 34 748 invitees, 3245 (9·3%) joined the cohort. Participants answered 81% (139 013) of the weekly questionnaires and 90% (16 351) of follow-up questionnaires. AGI incidence correlated with searches on winter-vomiting disease [r = 0·81, 95% confidence interval (CI) 0·69–0·89], and ARI incidence correlated with searches on cough (r = 0·77, 95% CI 0·62–0·86). ILI incidence correlated with the web query-based estimated incidence of ILI patients consulting physicians (r = 0·63, 95% CI 0·42–0·77). The high response to different questionnaires and the correlation with other syndromic surveillance systems suggest that Hӓlsorapport offers a reasonable representation of AGI, ARI and ILI patterns in the community and can complement traditional and syndromic surveillance systems to estimate their burden in the community.

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Evaluating Integrated Surveillance for Antimicrobial Use and Resistance in England: A Qualitative Study

Frontiers in Veterinary Science ◽

10.3389/fvets.2021.743857 ◽

2021 ◽

Vol 8 ◽

Author(s):

Houda Bennani ◽

Laura Cornelsen ◽

Katharina D. C. Stärk ◽

Barbara Häsler

Keyword(s):

Data Collection ◽

Qualitative Study ◽

Surveillance System ◽

Companion Animals ◽

Mitigation Measures ◽

Antimicrobial Use ◽

Surveillance Systems ◽

Structured Interviews ◽

A Value ◽

The Uk

Integrated surveillance systems for antimicrobial use (AMU) and antimicrobial resistance (AMR) require regular evaluation to ensure the effectiveness and efficiency of the system. An important step in the evaluation is to choose an appropriate tool for the purpose of the evaluation. The “Integrated Surveillance System Evaluation” (ISSE) framework is a conceptual framework that was developed to evaluate One Health (OH) integration in surveillance system for AMU/AMR. This study aimed to evaluate the performance and value of integrated surveillance system for AMU/AMR in England by applying the ISSE framework, which was used to develop data collection protocols and define the study design. A qualitative study using semi-structured interviews was conducted to collect the data and analyse it thematically. Eighteen stakeholders from human, animal, food and environment sectors that are involved in AMU/AMR surveillance were interviewed. Four main themes emerged from the analysis: (1) Cross-sectoral integration in the surveillance system for AMU/AMR; (2) Production of OH outputs and outcomes; (3) Drivers and barriers to cross-sectoral collaboration; and 4) Need for more cross-sectoral collaboration. The findings showed that there were links between integrated surveillance information, decision making and interventions. However, there were only few OH examples, such as the UK AMR contingency plan, where the potential of cross-sectoral collaboration was fully exploited. A lot of the benefits described were related to the generation of information and increase in knowledge and understanding without links to how the information generated was used. While these intangible benefits have a value on their own, being able to link surveillance information and mitigation measures would help to enhance the value of integrated surveillance. In terms of improvement, the main areas identified were the development of more harmonised methods for data collection and analysis, provision of resources dedicated to cross-sectoral collaboration, improved coordination, and collection of surveillance data from the environment and from companion animals. By identifying links between OH surveillance information produced and various outputs and outcomes; this study helped to understand the wider benefits of integrated surveillance for AMU/AMR in England and provided insights on how the system could be improved and efficiency increased.

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Immunisation provider experiences with an automated short message service-based active surveillance system for monitoring adverse events following immunisation: A qualitative descriptive study

Digital Health ◽

10.1177/20552076211038165 ◽

2021 ◽

Vol 7 ◽

pp. 205520762110381

Author(s):

Gurkamal Singh ◽

Rachel Nesaraj ◽

Nicolas Bchara ◽

Benjamin Kop ◽

Alan Leeb ◽

...

Keyword(s):

Adverse Events ◽

Active Surveillance ◽

Surveillance System ◽

Community Pharmacies ◽

Surveillance Systems ◽

Short Message ◽

Structured Interviews ◽

Message Service ◽

Australian Community

Objective Currently, active surveillance systems to monitor adverse events following immunisation are limited to hospitals, and medical and immunisation clinics. Globally, community pharmacies represent a significant destination for immunisation services. However, until recently, pharmacies lacked active surveillance systems. We therefore wished to explore pharmacists’ experiences with SmartVax: an active surveillance system that has recently been integrated for use in Australian community pharmacies. Specifically, we wished to explore pharmacists’ perceived (1) benefits of using SmartVax, (2) areas for improvement in the system, and (3) issues with future/ongoing access to the system. Methods The present study forms the qualitative arm of a convergent mixed-methods pilot study. In the present study, we performed semi-structured interviews with pharmacist immunisers after a 21- to 22-week trial period with SmartVax. Thematic analysis of interview transcripts was performed independently by two researchers in QSR NVivo 12, using the framework method. Results Fifteen participants completed the semi-structured interviews. A broad range of perceived benefits were cited by participants, including the usability of SmartVax, the ease of patient follow-up facilitated by the system, and enhancement to the patient–pharmacist relationship. Participants voiced a desire for the system to have more granularity and a faster response time in the report generated for pharmacies. When asked about issues with future/ongoing access to SmartVax, cost concerns of the system were the prevailing theme. Conclusions The present study suggests that, among pharmacist immuniser end-users of SmartVax, the system is perceived to be easy-to-use, facilitates patient follow-up, and enhances the patient–pharmacist relationship.

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Patterns in the prevalence of diabetes and incidence of diabetic complications in people with and without an intellectual disability in Dutch primary care: Insights from a population-based data-linkage study

Primary Care Diabetes ◽

10.1016/j.pcd.2020.11.012 ◽

2020 ◽

Author(s):

Maarten Cuypers ◽

Martijn Leijssen ◽

Esther J. Bakker-van Gijssel ◽

Katrien P.M. Pouls ◽

Mathilde M. Mastebroek ◽

...

Keyword(s):

Primary Care ◽

Intellectual Disability ◽

Diabetic Complications ◽

Data Linkage ◽

Population Based ◽

Linkage Study

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Comprehensive investigation of congenital anomalies in cerebral palsy: protocol for a European-Australian population-based data linkage study (The Comprehensive CA-CP Study)

BMJ Open ◽

10.1136/bmjopen-2018-022190 ◽

2018 ◽

Vol 8 (7) ◽

pp. e022190 ◽

Cited By ~ 2

Author(s):

Shona Goldsmith ◽

Guiomar Garcia Jalon ◽

Nadia Badawi ◽

Eve Blair ◽

Ester Garne ◽

...

Keyword(s):

Congenital Anomaly ◽

Cerebral Palsy ◽

Congenital Anomalies ◽

Data Linkage ◽

Collaborative Study ◽

Population Based ◽

Linkage Study ◽

Data Set ◽

Effective Prevention ◽

Causal Pathways

IntroductionCerebral palsy (CP), an umbrella term for non-progressive conditions of cerebral origin resulting in motor impairments, is collectively the most common cause of physical disability in childhood. Cerebral and/or non-cerebral congenital anomalies are present in 15%–40% of children with CP. In order to identify effective prevention strategies for this substantial proportion of CP, a comprehensive understanding of the epidemiology of these congenital anomalies is required. International collaboration is needed, as previous attempts have fallen short due to a lack of power, since the anomalies are individually rare and CP comprises many clinical descriptions. The aim of this study is to generate new knowledge about the aetiologies of CP through a focused investigation into the role of congenital anomalies.Methods and analysisThis collaborative, population-based data linkage study includes nine geographic regions (six in Europe, three in Australia) served by both congenital anomaly and CP registers. Register data for children with CP (both with and without congenital anomalies) and children with specific congenital anomalies (without CP) born between 1991 and 2009 will be linked and de-identified within each region. The resulting linked data sets will be quality assured, recoded, harmonised and then pooled into one data set. Analysis of the combined data set will include: frequencies/proportions of congenital anomalies and outcomes (type of CP, severity, impairments); descriptive analyses comparing timing of congenital anomaly development and brain injury/abnormality responsible for CP; ORs to calculate the odds of CP following a specific congenital anomaly; and identification of anomalies on causal pathways to CP.Ethics and disseminationEthics approval for this collaborative study, The Comprehensive CA-CP Study, has been obtained from the Cerebral Palsy Alliance Human Research Ethics Committee (EC00402). Study findings will be disseminated at conferences and published in peer-reviewed journals, and recommendations will be made regarding the collection and classification of congenital anomaly data by CP registers.

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Acceptability and adoption of health-facility based NCD surveillance in Kulon Progo district, Yogyakarta

Berita Kedokteran Masyarakat ◽

10.22146/bkm.37635 ◽

2018 ◽

pp. 15

Author(s):

Theodola Baning Rahayujati

Keyword(s):

Health Facility ◽

Surveillance System ◽

Heart Diseases ◽

Descriptive Analysis ◽

Data Entry ◽

Secondary Data ◽

Surveillance Systems ◽

Structured Interviews ◽

District Health ◽

Web Based

Background: Non-communicable diseases (NCD) have been recognized as the new disease pandemic to the developing world in recent years. In 2020, it is estimated that 70% of NCD-related deaths will occur in developing countries. The most prevalent NCD such as coronary heart diseases, cancer, respiratory diseases and diabetes mellitus. Since 2012 Indonesia MOH was established two main surveillance system i.e. health facility- and community-based surveillance systems. MOH report on 2015 showed those reporting from PHC less than 25%. The front-line of health facility-based surveillance is the primary health centers (PHC). Data should undergo validity and quality check by the District and Provincial Health Office before being sent to the central reporting system.This study aim to evaluate the implementation of health-facility based NCD surveillance and develops recommendations for increasing coverage NCD surveillance in Kulon Progo District. Method: We used RE-AIM (only Reach and Adoption) framework for evaluating the surveillance system. The Reach variables are coverage, knowledge, acceptance, constraint, infrastructure and feasibility. 76 NCD team at PHC and District Health office included doctor, nurse, program manager and laboratory staffs were interviewed and observed using a standardize questionnaire and checked list. Secondary data on NCD surveillance reports were collected and reviewed. Qualitative study were conducted through semi structured interviews and FGDs to evaluate acceptance, constraints and barriers of implementation. Descriptive analysis was used to analyze quantitative data and content analysis was performed on the qualitative data. Result: This study found that most of the health officer involving in the non-communicable program was having fair knowledge on web based NCD surveillance, and only 5% of the respondent has a good understanding on it. There are 19 Puskesmas was assessed on the completeness of the data entry on web based NCD surveillance.

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