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Objectives: Accurate record linkage (RL) enables consolidation and de-duplication of data from disparate datasets, resulting in more comprehensive and complete patient data. However, conducting RL with low quality or unfit data can waste institutional resources on poor linkage results. We aim to evaluate data linkability to enhance the effectiveness of record linkage., Materials and Methods: We describe a systematic approach using data fitness ("linkability") measures, defined as metrics that characterize the availability, discriminatory power, and distribution of potential variables for RL. We used the isolation forest algorithm to detect abnormal linkability values from 188 sites in Indiana and Colorado, and manually reviewed the data to understand the cause of anomalies., Result: We calculated 10 linkability metrics for 11 potential linkage variables (LVs) across 188 sites for a total of 20 680 linkability metrics. Potential LVs such as first name, last name, date of birth, and sex have low missing data rates, while Social Security Number vary widely in completeness among all sites. We investigated anomalous linkability values to identify the cause of many records having identical values in certain LVs, issues with placeholder values disguising data missingness, and orphan records., Discussion: The fitness of a variable for RL is determined by its availability and its discriminatory power to uniquely identify individuals. These results highlight the need for awareness of placeholder values, which inform the selection of variables and methods to optimize RL performance., Conclusion: Evaluating linkability measures using the isolation forest algorithm to highlight anomalous findings can help identify fitness-for-use issues that must be addressed before initiating the RL process to ensure high-quality linkage outcomes., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association.)

Objective: To describe the use of privacy preserving linkage methods operationally in Australia, and to present insights and key learnings from their implementation., Methods: Privacy preserving record linkage (PPRL) utilising Bloom filters provides a unique practical mechanism that allows linkage to occur without the release of personally identifiable information (PII), while still ensuring high accuracy., Results: The methodology has received wide uptake within Australia, with four state linkage units with privacy preserving capability. It has enabled access to general practice and private pathology data amongst other, both much sought after datasets previous inaccessible for linkage., Conclusion: The Australian experience suggests privacy preserving linkage is a practical solution for improving data access for policy, planning and population health research. It is hoped interest in this methodology internationally continues to grow., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.)

HeXEHRS is a FHIR-based cloud EHR service designed to support healthcare in depopulated areas, powered by digital twin technology. Its core functionalities encompass standard EHR tasks including data exchange for healthcare processes. In the first year of this national project, we present the design and define the functionalities of the system.

In this paper, we present the preliminary experiments for the development of an ingestion mechanism to move data from Electronic Health Records to machine learning processes, based on the concept of Linked Data and the JSON-LD format.

Our initiative aims to enhance the public health informatics infrastructure for surveillance of maternal and child health (MCH) using data captured from electronic health records (EHRs), public health information systems, and administrative health data. Our work includes development, validation, and application of linkage algorithms across records for mothers and children; integration of data across myriad sources; design of routine surveillance reports; and design of longitudinal studies to examine determinants and outcomes in MCH populations. Our work is conducted in partnership with governmental public health agencies, health care providers, academic institutions, and community-based organizations. Future work will build on the enhanced informatics infrastructure to draw from additional public health data sources and/or expand surveillance efforts to include prioritized MCH outcomes. We will further translate knowledge gained from surveillance into action, working with our partners to improve and sustain better MCH equitably in our population.

This paper explores the challenges and lessons learned during the mapping of HL7 v2 messages structured using custom schema to openEHR for the Medical Data Integration Center (MeDIC) of the University Hospital, Schleswig-Holstein (UKSH). Missing timestamps in observations, missing units of measurement, inconsistencies in decimal separators and unexpected datatypes were identified as critical inconsistencies in this process. These anomalies highlight the difficulty of automating the transformation of HL7 v2 data to any standard, particularly openEHR, using off-the-shelf tools. Addressing these anomalies is crucial for enhancing data interoperability, supporting evidence-based research, and optimizing clinical decision-making. Implementing proper data quality measures and governance will unlock the potential of integrated clinical data, empowering clinicians and researchers and fostering a robust healthcare ecosystem.

The Valkyrie project aims to develop a demonstration Federated Electronic Health Record for the use of mental health practitioners in Norway. Information for the record is drawn from existing records in Source Systems operating across primary and secondary care. Recording of information in any such system, in response to a healthcare event, triggers the generation of an Encrypted Token, containing summary metadata about the event, clinical coding indicating its clinical context and a locator that can be used to retrieve the full record of the event from the original Source System. The Valkyrie architecture consists of a number of interlinked Security Domains, each with its own private and public keys, through which the Encrypted Tokens are passed. Each Security Domain performs a specific function on a set of Tokens and only has access to the information within each Token that is necessary to perform that function. This paper describes the structure of the Encrypted Token, the function of each Security Domain and the orchestration of the flow of Tokens through the Domains. Together this allows a user to run a Valkyrie Session, in which they can view the content of a patient record, where all content has been drawn in real-time from heterogenous Source Systems (ISO13606- and openEHR-based) and is destroyed when the session terminates.

Real-world data (RWD) (i.e., data from Electronic Healthcare Records - EHRs, ePrescription systems, patient registries, etc.) gain increasing attention as they could support observational studies on a large scale. OHDSI is one of the most prominent initiatives regarding the harmonization of RWD and the development of relevant tools via the use of a common data model, OMOP-CDM. OMOP-CDM is a crucial step towards syntactic and semantic data interoperability. Still, OMOP-CDM is based on a typical relational database format, and thus, the vision of a fully connected semantically enriched model is not fully realized. This work presents an open-source effort to map the OMOP-CDM model and the data it hosts, to an ontological model using RDF to support the FAIRness of RWD and their interlinking with Linked Open Data (LOD) towards the vision of the Semantic Web.

Healthcare faces significant challenges in exchanging and utilizing health information across diverse providers, necessitating innovative solutions for improved interoperability. This study presents a comprehensive exploration of scalable technical and semantic solutions for patient care integration, emphasizing the implementation of these solutions within the framework of the Fast Healthcare Interoperability Resources (FHIR) standard. Our approach revolves around the development and deployment of Technical Interoperability Suite (TIS) and Semantic Interoperability Suite (SIS) technology solutions to disparate health information systems, predominantly Electronic Health Records (EHRs) into a unified Patient Care Platform, fostering comprehensive data exchange and utilization. The integration process involves importing data from various EHR systems and transforming imported patient data into FHIR-standardized formats. The provided solution supports various functionalities, including automatic and manual importation of patient data, through standard computer-readable templates. The integration of TIS and SIS solutions is underpinned by a robust technological framework, incorporating technologies such as Typescript, Deno, and document-oriented databases such as MongoDB. The effectiveness of our interoperability solutions was validated through deployment in multinational EU projects: ADLIFE and CAREPATH. The scalability and generalizability of our approach underscore its potential for diverse healthcare settings.

The integration of tumor-related diagnosis and therapy data is a key factor for cancer-related collaborative projects and research projects on-site. The Medical Data Integration Center (MeDIC) of the University Hospital Schleswig-Holstein, resulting from the Medical Informatics Initiative and Network University Medicine in Germany, has agreed on an openEHR-based data management based on a centralized repository with harmonized annotated data. Consequently, the oncological data should be integrated into the MeDIC to interconnect the information and thus gain added value. A uniform national data set for tumor-related reports is already defined for the cancer registries. Therefore, this work aims to transform the national oncological basis data set for tumor documentation (oBDS) so that it can be stored and utilized properly in the openEHR repository of the MeDIC. In a previous work openEHR templates representing the oncological basis data set were modeled. These templates were used to implement a processing pipeline including a metadata repository, which defines the mappings between the elements, a FHIR terminology service for annotation and validation, resulting in a tool to automatically build openEHR compositions from oBDS data. The prototype proved the feasibility of the referred mapping, integration into the MeDIC is straightforward and the architecture introduced is adaptable to future needs by design.

Over the last decade, the exponential growth in patient data volume and velocity has transformed it into a valuable resource for researchers. Yet, accessing comprehensive, unique patient data sets remains a challenge, particularly when individuals have received treatments across various practices and hospitals. Traditional record linkage methods fall short in adequately protecting patient privacy in these scenarios. Privacy Preserving Record Linkage (PPRL) offers a solution, employing techniques such as data cryptographic methods to identify common patients occurring in multiple datasets, while maintaining the privacy of other patients. This paper proposes an investigation into combined approaches of two common German PPRL tools, namely E-PIX and MainSEL. Each tool, while aiming for 'privacy preservation', employs distinct methods that offer unique advantages and drawbacks. Our research aims to explore these in a combined approach to leverage their respective strengths and mitigate their limitations. We anticipate that this synergistic approach will not only enhance data privacy but also allow for easier synchronisation of research data. This study is particularly pertinent in light of evolving privacy regulations and the increasing complexity of healthcare data management. By advancing PPRL methodologies, we aim to contribute to more robust, privacy-compliant data analysis practices in healthcare research.

Secondary use of data for research purposes is especially important in rare diseases (RD), since, per definition, data are sparse. The European Joint Programme on Rare Diseases (EJP RD) aims at developing an RD infrastructure which supports the secondary use of data. Significant amounts of RD data are a) distributed and b) available only in pseudonymised format. Privacy-Preserving Record Linkage (PPRL) concerns the linking of such distributed datasets without disclosing the participant's identities. We present a concept for linking a PPRL Service to the EJP RD Virtual Platform (VP). Level 1 (resource discovery) connection is provided by running an FDP within the PPRL Service. On Level 2 (data discoverability), the PPRL Service can represent both, an individual and a catalog endpoint. Our solution can count patients in PPRL-supporting resources, count duplicates only once, and count only patients registered to multiple resources. Currently, we are preparing the deployment within the EJP RD VP.

Analysis of integrated data often requires record linkage in order to join together the data residing in separate sources. In case linkage errors cannot be avoided, due to the lack a unique identity key that can be used to link the records unequivocally, standard statistical techniques may produce misleading inference if the linked data are treated as if they were true observations. In this paper, we propose methods for categorical data analysis based on linked data that are not prepared by the analyst, such that neither the match-key variables nor the unlinked records are available. The adjustment is based on the proportion of false links in the linked file and our approach allows the probabilities of correct linkage to vary across the records without requiring that one is able to estimate this probability for each individual record. It accommodates also the general situation where unmatched records that cannot possibly be correctly linked exist in all the sources. The proposed methods are studied by simulation and applied to real data., (© 2024 The Author(s). Statistics in Medicine published by John Wiley & Sons Ltd.)

Background: The National Cancer Institute funds many large cohort studies that rely on self-reported cancer data requiring medical record validation. This is labor intensive, costly, and prone to underreporting or misreporting of cancer and disparity-related differential response. US population-based central cancer registries identify incident cancer within their catchment area, yielding all malignant neoplasms and benign brain and central nervous system tumors with standardized data fields. This manuscript describes the development, implementation, and features of a system to facilitate linkage between cohort studies and cancer registries and the release of cancer registry data for matched cohort participants., Methods: The Virtual Pooled Registry-Cancer Linkage System (VPR-CLS) provides an online system to link cohorts with multiple state cancer registries by 1) securely transmitting a study file to registries, 2) providing an optimized linkage algorithm to generate preliminary match counts, and 3) providing a streamlined process and templated forms for submitting and tracking data requests for cohort participants who matched with registries., Results: In 2022, the VPR-CLS launched with 45 registries, covering 95% of the US state populations and Puerto Rico. Registries have linked with 15 studies having 14 273-10.9 million participants. Except in 1 study, linkage sensitivity ranged from 87.0% to 99.9%. Numerous registries have adopted the VPR-CLS templated institutional review board-registry application (n = 39), templated data use agreement (n = 25), and central institutional review board (n = 16)., Conclusions: The VPR-CLS markedly improves ascertainment of cancer outcomes and is the preferred approach for determination of outcomes from cohort studies, postmarketing surveillance, and clinical trials., (Published by Oxford University Press 2024.)

Background: Precision medicine has become a mainstay of cancer care in recent years. The National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program has been an authoritative source of cancer statistics and data since 1973. However, tumor genomic information has not been adequately captured in the cancer surveillance data, which impedes population-based research on molecular subtypes. To address this, the SEER Program has developed and implemented a centralized process to link SEER registries' tumor cases with genomic test results that are provided by molecular laboratories to the registries., Methods: Data linkages were carried out following operating procedures for centralized linkages established by the SEER Program. The linkages used Match*Pro, a probabilistic linkage software, and were facilitated by the registries' trusted third party (an honest broker). The SEER registries provide to NCI limited datasets that undergo preliminary evaluation prior to their release to the research community., Results: Recently conducted genomic linkages included OncotypeDX Breast Recurrence Score, OncotypeDX Breast Ductal Carcinoma in Situ, OncotypeDX Genomic Prostate Score, Decipher Prostate Genomic Classifier, DecisionDX Uveal Melanoma, DecisionDX Preferentially Expressed Antigen in Melanoma, DecisionDX Melanoma, and germline tests results in Georgia and California SEER registries., Conclusions: The linkages of cancer cases from SEER registries with genomic test results obtained from molecular laboratories offer an effective approach for data collection in cancer surveillance. By providing de-identified data to the research community, the NCI's SEER Program enables scientists to investigate numerous research inquiries., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

In a previous study, sepsis was noted as a diagnosis on the home health record only 4% of the time for 165,000 sepsis survivors transitioning from hospital to home health care in America. If sepsis and other conditions are not clearly documented in the transitional care record this can lead to unpreparedness, missed, care, and poor patient outcomes. Our implementation science study discovered a source of this problem regarding the sepsis documentation in 16 hospitals referring to five home care agencies. Together, researchers, hospital, and home care personnel developed and implemented two information technology solutions to address this deficit in seven hospitals. The automated method was more readily adopted and effective in improving information transfer between hospital and home health care.

Children with experience of maltreatment, abuse or neglect have higher prevalence of poor mental health. In the United Kingdom, child protection services identify children at risk of significant harm on the Child Protection Register (CPR) and intervene to reduce risk. Prevalence and incidence of mental health service use among this population of children are not well understood. We analysed records from one Scottish Local Authority's CPR, linked to electronic health records for all children in the broader health board region aged 0-17 years. We described mental health service use among children with a CPR registration using measures of mental health prescribing and referrals to child and adolescent mental health services (CAMHS). We calculated age- and sex-specific incidence rates for comparison with the general population. Between 2012 and 2022, we found 1498 children with a CPR registration, with 69% successfully linked to their health records. 20% were registered before birth and median age at registration was 3 years. Incidence rates in all measures of mental health service use were higher in children with a CPR record across all ages (at outcome) and genders compared to the general population. The largest absolute difference was for boys aged 5-9 with a CPR record, who had 31.8 additional mental health prescriptions per 1000 person-years compared to the general population (50.4 vs. 18.6 prescriptions per 1000 person-years, IRR: 2.7). Girls aged 0-4 years with a CPR registration had the largest relative difference, with a rate of CAMHS referral 5.4 times higher than the general population (12.3 vs. 2.3 per 1000 person-years). Our reproducible record linkage of the CPR to health records reveals an increased risk of mental health service use during childhood. Our findings have relevance to public mental health surveillance, service prioritisation and wider policy aiming to reduce childhood exposure to risk of harm., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Population Health Management - often abbreviated to PHM - is a relatively new approach for healthcare planning, requiring the application of analytical techniques to linked patient level data. Despite expectations for greater uptake of PHM, there is a deficit of available solutions to help health services embed it into routine use. This paper concerns the development, application and use of an interactive tool which can be linked to a healthcare system's data warehouse and employed to readily perform key PHM tasks such as population segmentation, risk stratification, and deriving various performance metrics and descriptive summaries. Developed through open-source code in a large healthcare system in South West England, and used by others around the country, this paper demonstrates the importance of a scalable, purpose-built solution for improving the uptake of PHM in health services., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Healthcare data are an important resource in applied medical research. They are available multicentrically. However, it remains a challenge to enable standardized data exchange processes between federal states and their individual laws and regulations. The Medical Informatics Initiative (MII) was founded in 2016 to implement processes that enable cross-clinic access to healthcare data in Germany. Several working groups (WGs) have been set up to coordinate standardized data structures (WG Interoperability), patient information and declarations of consent (WG Consent), and regulations on data exchange (WG Data Sharing). Here we present the most important results of the Data Sharing working group, which include agreed terms of use, legal regulations, and data access processes. They are already being implemented by the established Data Integration Centers (DIZ) and Use and Access Committees (UACs). We describe the services that are necessary to provide researchers with standardized data access. They are implemented with the Research Data Portal for Health, among others. Since the pilot phase, the processes of 385 active researchers have been used on this basis, which, as of April 2024, has resulted in 19 registered projects and 31 submitted research applications., (© 2024. The Author(s).)

The digital health progress hubs pilot the extensibility of the concepts and solutions of the Medical Informatics Initiative to improve regional healthcare and research. The six funded projects address different diseases, areas in regional healthcare, and methods of cross-institutional data linking and use. Despite the diversity of the scenarios and regional conditions, the technical, regulatory, and organizational challenges and barriers that the progress hubs encounter in the actual implementation of the solutions are often similar. This results in some common approaches to solutions, but also in political demands that go beyond the Health Data Utilization Act, which is considered a welcome improvement by the progress hubs.In this article, we present the digital progress hubs and discuss achievements, challenges, and approaches to solutions that enable the shared use of data from university hospitals and non-academic institutions in the healthcare system and can make a sustainable contribution to improving medical care and research., (© 2024. The Author(s).)

The Fellegi-Sunter model is a latent class model widely used in probabilistic linkage to identify records that belong to the same entity. Record linkage practitioners typically employ all available matching fields in the model with the premise that more fields convey greater information about the true match status and hence result in improved match performance. In the context of model-based clustering, it is well known that such a premise is incorrect and the inclusion of noisy variables could compromise the clustering. Variable selection procedures have therefore been developed to remove noisy variables. Although these procedures have the potential to improve record matching, they cannot be applied directly due to the ubiquity of the missing data in record linkage applications. In this paper, we modify the stepwise variable selection procedure proposed by Fop, Smart, and Murphy and extend it to account for missing data common in record linkage. Through simulation studies, our proposed method is shown to select the correct set of matching fields across various settings, leading to better-performing algorithms. The improved match performance is also seen in a real-world application. We therefore recommend the use of our proposed selection procedure to identify informative matching fields for probabilistic record linkage algorithms., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: Real-world data (RWD) collected on patients treated as part of routine clinical care form the basis of cancer clinical registries. Capturing accurate death data can be challenging, with inaccurate survival data potentially compromising the integrity of registry-based research. Here, we explore the utility of data linkage (DL) to state-based registries to enhance the capture of survival outcomes., Methods: We identified consecutive adult patients with brain tumors treated in the state of Victoria from the Brain Tumour Registry Australia: Innovation and Translation (BRAIN) database, who had no recorded date of death and no follow-up within the last 6 months. Full name and date of birth were used to match patients in the BRAIN registry with those in the Victorian Births, Deaths and Marriages (BDM) registry. Overall survival (OS) outcomes were compared pre- and post-DL., Results: Of the 7,346 clinical registry patients, 5,462 (74%) had no date of death and no follow-up recorded within the last 6 months. Of the 5,462 patients, 1,588 (29%) were matched with a date of death in BDM. Factors associated with an increased number of matches were poor prognosis tumors, older age, and social disadvantage. OS was significantly overestimated pre-DL compared with post-DL for the entire cohort (pre- v post-DL: hazard ratio, 1.43; P < .001; median, 29.9 months v 16.7 months) and for most individual tumor types. This finding was present independent of the tumor prognosis., Conclusion: As revealed by linkage with BDM, a high proportion of patients in a brain cancer clinical registry had missing death data, contributed to by informative censoring, inflating OS calculations. DL to pertinent registries on an ongoing basis should be considered to ensure accurate reporting of survival data and interpretation of RWD outcomes.

The interoperability Working Group of the Medical Informatics Initiative (MII) is the platform for the coordination of overarching procedures, data structures, and interfaces between the data integration centers (DIC) of the university hospitals and national and international interoperability committees. The goal is the joint content-related and technical design of a distributed infrastructure for the secondary use of healthcare data that can be used via the Research Data Portal for Health. Important general conditions are data privacy and IT security for the use of health data in biomedical research. To this end, suitable methods are used in dedicated task forces to enable procedural, syntactic, and semantic interoperability for data use projects. The MII core dataset was developed as several modules with corresponding information models and implemented using the HL7® FHIR® standard to enable content-related and technical specifications for the interoperable provision of healthcare data through the DIC. International terminologies and consented metadata are used to describe these data in more detail. The overall architecture, including overarching interfaces, implements the methodological and legal requirements for a distributed data use infrastructure, for example, by providing pseudonymized data or by federated analyses. With these results of the Interoperability Working Group, the MII is presenting a future-oriented solution for the exchange and use of healthcare data, the applicability of which goes beyond the purpose of research and can play an essential role in the digital transformation of the healthcare system., (© 2024. The Author(s).)

Background: Cancer registries link a large number of electronic health records reported by medical institutions to already registered records of the matching individual and tumor. Records are automatically linked using deterministic and probabilistic approaches; machine learning is rarely used. Records that cannot be matched automatically with sufficient accuracy are typically processed manually. For application, it is important to know how well record linkage approaches match real-world records and how much manual effort is required to achieve the desired linkage quality. We study the task of linking reported records to the matching registered tumor in cancer registries., Methods: We compare the tradeoff between linkage quality and manual effort of five machine learning methods (logistic regression, random forest, gradient boosting, neural network, and a stacked method) to a deterministic baseline. The record linkage methods are compared in a two-class setting (no-match/ match) and a three-class setting (no-match/ undecided/ match). A cancer registry collected and linked the dataset consisting of categorical variables matching 145,755 reported records with 33,289 registered tumors., Results: In the two-class setting, the gradient boosting, neural network, and stacked models have higher accuracy and F 1 score (accuracy: 0.968-0.978, F 1 score: 0.983-0.988) than the deterministic baseline (accuracy: 0.964, F 1 score: 0.980) when the same records are manually processed (0.89% of all records). In the three-class setting, these three machine learning methods can automatically process all reported records and still have higher accuracy and F 1 score than the deterministic baseline. The linkage quality of the machine learning methods studied, except for the neural network, increase as the number of manually processed records increases., Conclusion: Machine learning methods can significantly improve linkage quality and reduce the manual effort required by medical coders to match tumor records in cancer registries compared to a deterministic baseline. Our results help cancer registries estimate how linkage quality increases as more records are manually processed., Competing Interests: Declaration of Competing Interest The authors declare that they have no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Objectives:  Patient data are fragmented across multiple repositories, yielding suboptimal and costly care. Record linkage algorithms are widely accepted solutions for improving completeness of patient records. However, studies often fail to fully describe their linkage techniques. Further, while many frameworks evaluate record linkage methods, few focus on producing gold standard datasets. This highlights a need to assess these frameworks and their real-world performance. We use real-world datasets and expand upon previous frameworks to evaluate a consistent approach to the manual review of gold standard datasets and measure its impact on algorithm performance., Methods:  We applied the framework, which includes elements for data description, reviewer training and adjudication, and software and reviewer descriptions, to four datasets. Record pairs were formed and between 15,000 and 16,500 records were randomly sampled from these pairs. After training, two reviewers determined match status for each record pair. If reviewers disagreed, a third reviewer was used for final adjudication., Results:  Between the four datasets, the percent discordant rate ranged from 1.8 to 13.6%. While reviewers' discordance rate typically ranged between 1 and 5%, one exhibited a 59% discordance rate, showing the importance of the third reviewer. The original analysis was compared with three sensitivity analyses. The original analysis most often exhibited the highest predictive values compared with the sensitivity analyses., Conclusion:  Reviewers vary in their assessment of a gold standard, which can lead to variances in estimates for matching performance. Our analysis demonstrates how a multireviewer process can be applied to create gold standards, identify reviewer discrepancies, and evaluate algorithm performance., Competing Interests: None declared., (Thieme. All rights reserved.)

Background: Electronic health records (EHR) emerged as a digital record of the data that is generated in the healthcare., Objectives: In this paper the transfer times of EHRs using the Hypertext Transfer Protocol and WebSocket in both local network and wide area network (WAN) are compared., Methods: A python web application to serve Fast Health Interoperability Resources (FHIR) records is created and the transfer times of the EHRs over both HTTP and WebSocket connection are measured. 45000 test Patient resources in 20, 50, 100 and 200 resources per Bundle transfers are used., Results: WebSocket showed much better transfer times of large amount of data. These were 18 s shorter in the local network and 342 s shorter in WAN for the 20 resource per Bundle transfer., Conclusion: RESTful APIs are a convenient way to implement EHR servers; on the other hand, HTTP becomes a bottleneck when transferring large amount of data. WebSocket shows better transfer times and thus its superiority in such situations. The problem can be addressed by developing a new communication protocol or by using network tunneling to handle large data transfer of EHRs.

Background: To overcome the limitations of relying on data from a single institution, many researchers have studied data linkage methodologies. Data linkage includes errors owing to legal issues surrounding personal information and technical issues related to data processing. Linkage errors affect selection bias, and external and internal validity. Therefore, quality verification for each connection method with adherence to personal information protection is an important issue. This study evaluated the linkage quality of linked data and analyzed the potential bias resulting from linkage errors., Methods: This study analyzed claims data submitted to the Health Insurance Review and Assessment Service (HIRA DATA). The linkage errors of the two deterministic linkage methods were evaluated based on the use of the match key. The first deterministic linkage uses a unique identification number, and the second deterministic linkage uses the name, gender, and date of birth as a set of partial identifiers. The linkage error included in this deterministic linkage method was compared with the absolute standardized difference (ASD) of Cohen's according to the baseline characteristics, and the linkage quality was evaluated through the following indicators: linked rate, false match rate, missed match rate, positive predictive value, sensitivity, specificity, and F1-score., Results: For the deterministic linkage method that used the name, gender, and date of birth as a set of partial identifiers, the true match rate was 83.5 and the missed match rate was 16.5. Although there was bias in some characteristics of the data, most of the ASD values were less than 0.1, with no case greater than 0.5. Therefore, it is difficult to determine whether linked data constructed with deterministic linkages have substantial differences., Conclusion: This study confirms the possibility of building health and medical data at the national level as the first data linkage quality verification study using big data from the HIRA. Analyzing the quality of linkages is crucial for comprehending linkage errors and generating reliable analytical outcomes. Linkers should increase the reliability of linked data by providing linkage error-related information to researchers. The results of this study will serve as reference data to increase the reliability of multicenter data linkage studies., Competing Interests: The authors have no potential conflicts of interest to disclose., (© 2024 The Korean Academy of Medical Sciences.)

Objective Data linkage is a very powerful research tool in epidemiology, however, establishing this can be a lengthy and intensive process. This paper reports on the complex landscape of conducting data linkage projects in Australia. Methods We reviewed the processes, required documentation, and applications required to conduct multi-jurisdictional data linkage across Australia, in 2023. Results Obtaining the necessary approvals to conduct linkage will likely take nearly 2 years (estimated 730 days, including 605 days from initial submission to obtaining all ethical approvals and an estimated further 125 days for the issuance of unexpected additionally required approvals). Ethical review for linkage projects ranged from 51 to 128 days from submission to ethical approval, and applications consisted of 9-25 documents. Conclusions Major obstacles to conducting multi-jurisdictional data linkage included the complexity of the process, and substantial time and financial costs. The process was characterised by inefficiencies at several levels, reduplication, and a lack of any key accountabilities for timely performance of processes. Data linkage is an invaluable resource for epidemiological research. Further streamlining, establishing accountability, and greater collaboration between jurisdictions is needed to ensure data linkage is both accessible and feasible to researchers.

Introduction: Recent years have seen an increase in linkages between survey and administrative data. It is important to evaluate the quality of such data linkages to discern the likely reliability of ensuing research. Evaluation of linkage quality and bias can be conducted using different approaches, but many of these are not possible when there is a separation of processes for linkage and analysis to help preserve privacy, as is typically the case in the UK (and elsewhere)., Objectives: We aimed to describe a suite of generalisable methods to evaluate linkage quality and population representativeness of linked survey and administrative data which remain tractable when users of the linked data are not party to the linkage process itself. We emphasise issues particular to longitudinal survey data throughout., Methods: Our proposed approaches cover several areas: i) Linkage rates, ii) Selection into response, linkage consent and successful linkage, iii) Linkage quality, and iv) Linked data population representativeness. We illustrate these methods using a recent linkage between the 1958 National Child Development Study (NCDS; a cohort following an initial 17,415 people born in Great Britain in a single week of 1958) and Hospital Episode Statistics (HES) databases (containing important information regarding admissions, accident and emergency attendances and outpatient appointments at NHS hospitals in England)., Results: Our illustrative analyses suggest that the linkage quality of the NCDS-HES data is high and that the linked sample maintains an excellent level of population representativeness with respect to the single dimension we assessed., Conclusions: Through this work we hope to encourage providers and users of linked data resources to undertake and publish thorough evaluations. We further hope that providing illustrative analyses using linked NCDS-HES data will improve the quality and transparency of research using this particular linked data resource., Competing Interests: Statement on conflicts of interest: The authors have no conflicts of interest to declare.

In many healthcare and social science applications, information about units is dispersed across multiple data files. Linking records across files is necessary to estimate the associations of interest. Common record linkage algorithms only rely on similarities between linking variables that appear in all the files. Moreover, analysis of linked files often ignores errors that may arise from incorrect or missed links. Bayesian record linking methods allow for natural propagation of linkage error, by jointly sampling the linkage structure and the model parameters. We extend an existing Bayesian record linkage method to integrate associations between variables exclusive to each file being linked. We show analytically, and using simulations, that the proposed method can improve the linking process, and can result in accurate inferences. We apply the method to link Meals on Wheels recipients to Medicare enrollment records., (© 2023 John Wiley & Sons Ltd.)

Research with administrative records involves the challenge of limited information in any single data source to answer policy-related questions. Record linkage provides researchers with a tool to supplement administrative datasets with other information about the same people when identified in separate sources as matched pairs. Several solutions are available for undertaking record linkage, producing linkage keys for merging data sources for positively matched pairs of records. In the current manuscript, we demonstrate a new application of the Python RecordLinkage package to family-based record linkages with machine learning algorithms for probability scoring, which we call probabilistic record linkage for families (PRLF). First, a simulation of administrative records identifies PRLF accuracy with variations in match and data degradation percentages. Accuracy is largely influenced by degradation (e.g., missing data fields, mismatched values) compared to the percentage of simulated matches. Second, an application of data linkage is presented to compare regression model estimate performance across three record linkage solutions (PRLF, ChoiceMaker, and Link Plus). Our findings indicate that all three solutions, when optimized, provide similar results for researchers. Strengths of our process, such as the use of ensemble methods, to improve match accuracy are discussed. We then identify caveats of record linkage in the context of administrative data., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Prindle et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Novel record linkage (RL) methods have the potential to enhance clinical informatics by integrating patient data from multiple sources-including electronic health records, insurance claims, and digital health devices-to inform patient-centered care. Engaging patients and other stakeholders in the use of RL methods in patient-centered outcomes research (PCOR) is a key step in ensuring RL methods are viewed as acceptable, appropriate, and useful. The University of Colorado Record Linkage (CURL) platform empowers the use of RL in PCOR., Objectives: This study aimed to describe the process of engaging patients and other stakeholders in the design of an RL dissemination package to support the use of RL methods in PCOR., Methods: Customer discovery, value proposition design, and user experience methods were used to iteratively develop an RL dissemination package that includes animated explainer videos for patients and an RL research planning workbook for researchers. Patients and other stakeholders (researchers, data managers, and regulatory officials) were engaged in the RL dissemination package design., Results: Patient partners emphasized the importance of conveying how RL methods may benefit patients and the rules researchers must follow to protect the privacy and security of patient data. Other stakeholders described accuracy, flexibility, efficiency, and data security compared with other available RL solutions. Dissemination package communication products reflect the value propositions identified by key stakeholders. As prioritized by patients, the animated explainer videos emphasize the data privacy and security processes and procedures employed when performing research using RL. The RL workbook addresses researchers' and data managers' needs to iteratively design RL projects and provides accompanying resources to alleviate leadership and regulatory officials' concerns about data regulation compliance., Conclusion: Dissemination products to promote adoption and use of CURL include materials to facilitate patient engagement in RL research and investigator step-by-step decision-making materials about the integration of RL methods in PCOR., Competing Interests: None declared., (Thieme. All rights reserved.)

Accurate record linkage depends on the availability and quality of features such as first name and last name. Privacy preserving record linkage methods using tokenization is sensitive to perturbations in the patient features used as inputs. In this study we evaluated the impact of name transformations on the accuracy of patient matching using a large commercial dataset. We used a set of 68 million records representing 59 million unique individuals, and implemented and evaluated eight name transformation strategies, and generated precision, recall and F1 scores. Transforming names to include the most common nicknames resulted in a significant gain in recall while maintaining precision, and generated the highest F1 score compared with no name transformation (0.905 vs 0.807). Strategies tailored to transforming patient features can improve the precision and recall of patient matching, and make it possible to create high quality, linked datasets for research purposes., (©2022 AMIA - All rights reserved.)

Background: The aim of the project "Effectiveness of care in oncological centres" (WiZen), funded by the innovation fund of the federal joint committee, is to investigate the effectiveness of certification in oncology. The project uses nationwide data from the statuory health insurance AOK and data from clinical cancer registries from three different federal states from 2006-2017. To combine the strengths of both data sources, these will be linked for eight different cancer entities in compliance with data protection regulations., Methods: Data linkage was performed using indirect identifiers and validated using the health insurance's patient ID ("Krankenversichertennummer") as a direct identifier and gold standard. This enables quantification of the quality of different linkage variants. Sensitivity and specificity as well as hit accuracy and a score addressing the quality of the linkage were used as evaluation criteria. The distributions of relevant variables resulting from the linkage were validated against the original distributions in the individual datasets., Results: Depending on the combination of indirect identifiers, we found a range of 22,125 to 3,092,401 linkage hits. An almost perfect linkage could be achieved by combining information on cancer type, date of birth, gender and postal code. A total of 74,586 one-to-one linkages were achieved with these characteristics. The median hit quality for the different entities was more than 98%. In addition, both the age and sex distributions and the dates of death, if any, showed a high degree of agreement., Discussion and Conclusion: SHI and cancer registry data can be linked with high internal and external validity at the individual level. This robust linkage enables completely new possibilities for analysis through simultaneous access to variables from both data sets ("the best of both worlds"): Information on the UICC stage that stems from the registries can now be combined, for instance, with comorbidities from the SHI data at the individual level. Due to the use of readily available variables and the high success of the linkage, our procedure constitutes a promising method for future linkage processes in health care research., Competing Interests: CB, VB, JS und OS arbeiten an einem Universitätsklinikum mit zertifizierten Krebszentren, und MR hat in der Vergangenheit dort gearbeitet. Darüber hinaus erhielten sie während der Durchführung der Studie eine Förderung durch den Innovationsausschuss des Gemeinsamen Bundesausschusses. Unabhängig von dieser Studie erhielt JS institutionelle Zuschüsse für die Investigator-initiierte Forschung vom GBA, dem BMG, BMBF, der EU, dem Bundesland Sachsen, Novartis, Sanofi, ALK und Pfizer. Außerdem nahm er als bezahlter Berater für Sanofi, Lilly und die ALK an Advisory Board Meetings teil. Unabhängig von dieser Studie war OS als bezahlter Berater für Novartis tätig. Er ist außerdem Mitglied der Zertifizierungskommission „Hautkrebszentren“ der Deutschen Krebsgesellschaft und Mitglied des Expertengremiums im Projekt „Entwicklung von Kriterien zur Bewertung von Zertifikaten und Qualitätssiegeln nach § 137a Abs. 3 Satz 2 Nr. 7 SGB V“ für das Institut für Qualitätssicherung und Transparenz im Gesundheitswesen (IQTIG). Die anderen Autoren erklären, dass sie keinen Interessenkonflikt haben., (Thieme. All rights reserved.)

Background: Methods for linking records between two datasets are well established. However, guidance is needed for linking more than two datasets. Using all 'pairwise linkages'-linking each dataset to every other dataset-is the most inclusive, but resource-intensive, approach. The 'spine' approach links each dataset to a designated 'spine dataset', reducing the number of linkages, but potentially reducing linkage quality., Methods: We compared the pairwise and spine linkage approaches using real-world data on patients undergoing emergency bowel cancer surgery between 31 October 2013 and 30 April 2018. We linked an administrative hospital dataset (Hospital Episode Statistics; HES) capturing patients admitted to hospitals in England, and two clinical datasets comprising patients diagnosed with bowel cancer and patients undergoing emergency bowel surgery., Results: The spine linkage approach, with HES as the spine dataset, created an analysis cohort of 15 826 patients, equating to 98.3% of the 16 100 patients identified using the pairwise linkage approach. There were no systematic differences in patient characteristics between these analysis cohorts. Associations of patient and tumour characteristics with mortality, complications and length of stay were not sensitive to the linkage approach. When eligibility criteria were applied before linkage, spine linkage included 14 509 patients (90.0% compared with pairwise linkage)., Conclusion: Spine linkage can be used as an efficient alternative to pairwise linkage if case ascertainment in the spine dataset and data quality of linkage variables are high. These aspects should be systematically evaluated in the nominated spine dataset before spine linkage is used to create the analysis cohort., (© The Author(s) 2022. Published by Oxford University Press on behalf of the International Epidemiological Association.)

Objectives: Poor oral health, impacting health and wellbeing across the life-course, is a costly and wicked problem. Data (or record) linkage is the linking of different sets of data (often administrative data gathered for non-research purposes) that are matched to an individual and may include records such as medical data, housing information and sociodemographic information. It often uses population-level data or 'big data'. Data linkage provides the opportunity to analyse complex associations from different sources for total populations. The aim of the paper is to explore data linkage, how it is important for oral health research and what promise it holds for the future., Methods: This is a narrative review of an approach (data linkage) in oral health research., Results: Data linkage may be a powerful method for bringing together various population datasets. It has been used to explore a wide variety of topics with many varied datasets. It has substantial current and potential application in oral health research., Conclusions: Use of population data linkage is increasing in oral health research where the approach has been very useful in exploring the complexity of oral health. It offers promise for exploring many new areas in the field., (© 2023 The Authors. Community Dentistry and Oral Epidemiology published by John Wiley & Sons Ltd.)

Introduction: Research data combined with administrative data provides a robust resource capable of answering unique research questions. However, in cases where personal health data are encrypted, due to ethics requirements or institutional restrictions, traditional methods of deterministic and probabilistic record linkages are not feasible. Instead, privacy-preserving record linkages must be used to protect patients' personal data during data linkage., Objectives: To determine the feasibility and validity of a deterministic privacy preserving data linkage protocol using homomorphically encrypted data., Methods: Feasibility was measured by the number of records that successfully matched via direct identifiers. Validity was measured by the number of records that matched with multiple indirect identifiers. The threshold for feasibility and validity were both set at 95%. The datasets shared a single, direct identifier (health card number) and multiple indirect identifiers (sex and date of birth). Direct identifiers were encrypted in both datasets and then transferred to a third-party server capable of linking the encrypted identifiers without decrypting individual records. Once linked, the study team used indirect identifiers to verify the accuracy of the linkage in the final dataset., Results: With a combination of manual and automated data transfer in a sample of 8,128 individuals, the privacy-preserving data linkage took 36 days to match to a population sample of over 3.2 million records. 99.9% of the records were successfully matched with direct identifiers, and 99.8% successfully matched with multiple indirect identifiers. We deemed the linkage both feasible and valid., Conclusions: As combining administrative and research data becomes increasingly common, it is imperative to understand options for linking data when direct linkage is not feasible. The current linkage process ensured the privacy and security of patient data and improved data quality. While the initial implementations required significant computational and human resources, increased automation keeps the requirements within feasible bounds., Competing Interests: Conflicts of interest: There are no conflicts of interest to report.

Healthcare systems are hampered by incomplete and fragmented patient health records. Record linkage is widely accepted as a solution to improve the quality and completeness of patient records. However, there does not exist a systematic approach for manually reviewing patient records to create gold standard record linkage data sets. We propose a robust framework for creating and evaluating manually reviewed gold standard data sets for measuring the performance of patient matching algorithms. Our 8-point approach covers data preprocessing, blocking, record adjudication, linkage evaluation, and reviewer characteristics. This framework can help record linkage method developers provide necessary transparency when creating and validating gold standard reference matching data sets. In turn, this transparency will support both the internal and external validity of recording linkage studies and improve the robustness of new record linkage strategies., (© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association.)

Objective: The aim of this study was to determine whether a secure, privacy-preserving record linkage (PPRL) methodology can be implemented in a scalable manner for use in a large national clinical research network., Results: We established the governance and technical capacity to support the use of PPRL across the National Patient-Centered Clinical Research Network (PCORnet ® ). As a pilot, four sites used the Datavant software to transform patient personally identifiable information (PII) into de-identified tokens. We queried the sites for patients with a clinical encounter in 2018 or 2019 and matched their tokens to determine whether overlap existed. We described patient overlap among the sites and generated a "deduplicated" table of patient demographic characteristics. Overlapping patients were found in 3 of the 6 site-pairs. Following deduplication, the total patient count was 3,108,515 (0.11% reduction), with the largest reduction in count for patients with an "Other/Missing" value for Sex; from 198 to 163 (17.6% reduction). The PPRL solution successfully links patients across data sources using distributed queries without directly accessing patient PII. The overlap queries and analysis performed in this pilot is being replicated across the full network to provide additional insight into patient linkages among a distributed research network., (© 2022. The Author(s).)

Objective: To present a standardized methodology for linking different public health databases., Methods: This was a methodological review article specifically describing data processing procedures for deterministic linkage between structured databases. It instructs on how to: treat data, select linkage keys, and link databases using two databases simulated in R software., Results: The commands used for the deterministic linkage of the inner&#95;join type were presented. The linkage process resulted in a database with 40,108 pairs using only the "Name" key. Adding the second key, "Name of mother", the resulted dropped to 112 pairs. By adding the third key, "Date of birth", only two pairs were identified., Conclusion: Database linkage and its analysis are valid and valuable tools for health services in supporting health surveillance actions.

Background and Objectives: To highlight the potential of multiple file record linkage. Linkage increases the value of existing information by supplying missing data or correcting errors in existing data, through generating important covariates, and by using family information to control for unmeasured variables and expand research opportunities., Methods: Recent Manitoba papers highlight the use of linkage to produce better studies. Specific ways in which linkage helps deal with different substantive issues are described., Results: Wide data files-files containing considerable amounts of information on each individual-generated by linkage improve research by facilitating better design. Nonexperimental work in particular benefits from such linkages. Population registries are especially valuable in supplying family data to facilitate work across different substantive fields., Conclusion: Several examples show how record linkage magnifies the value of information from individual projects. The results of observational studies become more defensible through the better designs facilitated by such linkage., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Quality patient care requires comprehensive health care data from a broad set of sources. However, missing data in medical records and matching field selection are 2 real-world challenges in patient-record linkage., Objective: In this study, we aimed to evaluate the extent to which incorporating the missing at random (MAR)-assumption in the Fellegi-Sunter model and using data-driven selected fields improve patient-matching accuracy using real-world use cases., Methods: We adapted the Fellegi-Sunter model to accommodate missing data using the MAR assumption and compared the adaptation to the common strategy of treating missing values as disagreement with matching fields specified by experts or selected by data-driven methods. We used 4 use cases, each containing a random sample of record pairs with match statuses ascertained by manual reviews. Use cases included health information exchange (HIE) record deduplication, linkage of public health registry records to HIE, linkage of Social Security Death Master File records to HIE, and deduplication of newborn screening records, which represent real-world clinical and public health scenarios. Matching performance was evaluated using the sensitivity, specificity, positive predictive value, negative predictive value, and F1-score., Results: Incorporating the MAR assumption in the Fellegi-Sunter model maintained or improved F1-scores, regardless of whether matching fields were expert-specified or selected by data-driven methods. Combining the MAR assumption and data-driven fields optimized the F1-scores in the 4 use cases., Conclusions: MAR is a reasonable assumption in real-world record linkage applications: it maintains or improves F1-scores regardless of whether matching fields are expert-specified or data-driven. Data-driven selection of fields coupled with MAR achieves the best overall performance, which can be especially useful in privacy-preserving record linkage., (©Xiaochun Li, Huiping Xu, Shaun Grannis. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 29.09.2022.)

Linking several databases containing information on the same person is an essential step of many data workflows. Due to the potential sensitivity of the data, the identity of the persons should be kept private. Privacy-Preserving Record-Linkage (PPRL) techniques have been developed to link persons despite errors in the identifiers used to link the databases without violating their privacy. The basic approach is to use encoded quasi-identifiers instead of plain quasi-identifiers for making the linkage decision. Ideally, the encoded quasi-identifiers should prevent re-identification but still allow for a good linkage quality. While several PPRL techniques have been proposed so far, Bloom filter-based PPRL schemes (BF-PPRL) are among the most popular due to their scalability. However, a recently proposed attack on BF-PPRL based on graph similarities seems to allow individuals' re-identification from encoded quasi-identifiers. Therefore, the graph matching attack is widely considered a serious threat to many PPRL-approaches and leads to the situation that BF-PPRL schemes are rejected as being insecure. In this work, we argue that this view is not fully justified. We show by experiments that the success of graph matching attacks requires a high overlap between encoded and plain records used for the attack. As soon as this condition is not fulfilled, the success rate sharply decreases and renders the attacks hardly effective. This necessary condition does severely limit the applicability of these attacks in practice and also allows for simple but effective countermeasures., Competing Interests: The authors have declared that no competing interests exist.

Background: Chronic kidney disease (CKD) is a major global health problem that affects approximately one in 10 adults. Up to 90% of individuals with CKD go undetected until its progression to advanced stages, invariably leading to death in the absence of treatment. The project aims to fill information gaps around the burden of CKD in the Western Australian (WA) population, including incidence, prevalence, rate of progression, and economic cost to the health system., Methods: Given the sensitivity of the information involved, the project employed a privacy preserving record linkage methodology to link data from four major pathology providers in WA to hospital records, to establish a CKD registry with continuous medical record for individuals with biochemical specification for CKD. This method uses encrypted personal identifying information in a probability-based linkage framework (Bloom filters) to help mitigate risk while maximizing linkage quality., Results: The project developed interoperable technology to create a transparent CKD data catalogue which is linkable to other datasets. This technology has been designed to support the aspirations of the research program to provide linked de-identified pathology, morbidity, and mortality data that can be used to derive insights to enable better CKD patient outcomes. The cohort includes over 1 million individuals with creatinine results over the period 2002 to 2021., Conclusion: Using linked data from across the care continuum, researchers are able to evaluate the effectiveness of service delivery and provide evidence for policy and program development. The CKD registry will enable an innovative review of the epidemiology of CKD in WA. Linking pathology records can identify cases of CKD that are missed in the early stages due to disaggregation of results, enabling identification of at-risk populations that represent targets for early intervention and management., Competing Interests: None declared., (The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/).)

Objective: This study sought both to support evidence-based patient identity policy development by illustrating an approach for formally evaluating operational matching methods, and also to characterize the performance of both referential and probabilistic patient matching algorithms using real-world demographic data., Materials and Methods: We assessed matching accuracy for referential and probabilistic matching algorithms using a manually reviewed 30 000 record gold standard reference dataset derived from a large health information exchange containing over 47 million patient registrations. We applied referential and probabilistic algorithms to this dataset and compared the outputs to the gold standard. We computed performance metrics including sensitivity (recall), positive predictive value (precision), and F-score for each algorithm., Results: The probabilistic algorithm exhibited sensitivity, positive predictive value (PPV), and F-score of .6366, 0.9995, and 0.7778, respectively. The referential algorithm exhibited corresponding sensitivity, PPV, and F-score values of 0.9351, 0.9996, and 0.9663, respectively. Treating discordant and limited-data records as nonmatches increased referential match sensitivity to 0.9578. Compared to the more traditional probabilistic approach, referential matching exhibits greater accuracy., Conclusions: Referential patient matching, an increasingly popular method among health IT vendors, demonstrated notably greater accuracy than a more traditional probabilistic approach without the adaptation of the algorithm to the data that the traditional probabilistic approach usually requires. Health IT policymakers, including the Office of the National Coordinator for Health Information Technology (ONC), should explore strategies to expand the evidence base for real-world matching system performance, given the need for an evidence-based patient identity strategy., (© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association.)

Background: Public health research frequently requires the integration of information from different data sources. However, errors in the records and the high computational costs involved make linking large administrative databases using record linkage (RL) methodologies a major challenge., Methods: We present Tucuxi-BLAST, a versatile tool for probabilistic RL that utilizes a DNA-encoded approach to encrypt, analyze and link massive administrative databases. Tucuxi-BLAST encodes the identification records into DNA. BLASTn algorithm is then used to align the sequences between databases. We tested and benchmarked on a simulated database containing records for 300 million individuals and also on four large administrative databases containing real data on Brazilian patients., Results: Our method was able to overcome misspellings and typographical errors in administrative databases. In processing the RL of the largest simulated dataset (200k records), the state-of-the-art method took 5 days and 7 h to perform the RL, while Tucuxi-BLAST only took 23 h. When compared with five existing RL tools applied to a gold-standard dataset from real health-related databases, Tucuxi-BLAST had the highest accuracy and speed. By repurposing genomic tools, Tucuxi-BLAST can improve data-driven medical research and provide a fast and accurate way to link individual information across several administrative databases., Competing Interests: Helder I. Nakaya and Robson Souza are Academic Editors for PeerJ., (© 2022 Araujo et al.)

Record linkage is an important problem studied widely in many domains including biomedical informatics. A standard version of this problem is to cluster records from several datasets, such that each cluster has records pertinent to just one individual. Typically, datasets are huge in size. Hence, existing record linkage algorithms take a very long time. It is thus essential to develop novel fast algorithms for record linkage. The incremental version of this problem is to link previously clustered records with new records added to the input datasets. A novel algorithm has been created to efficiently perform standard and incremental record linkage. This algorithm leverages a set of efficient techniques that significantly restrict the number of record pair comparisons and distance computations. Our algorithm shows an average speed-up of 2.4x (up to 4x) for the standard linkage problem as compared to the state-of-the-art, without any drop in linkage performance at all. On average, our algorithm can incrementally link records in just 33% of the time required for linking them from scratch. Our algorithms achieve comparable or superior linkage performance and outperform the state-of-the-art in terms of linking time in all cases where the number of comparison attributes is greater than two. In practice, more than two comparison attributes are quite common. The proposed algorithm is very efficient and could be used in practice for record linkage applications especially when records are being added over time and linkage output needs to be updated frequently., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Background: In recent years, there has been an increasing demand for the reuse of research data in accordance with the so-called FAIR principles. This would allow researchers to conduct projects on a broader data basis and to investigate new research questions by linking different data sources., Objectives: We explored if nationwide linking of claims data from statutory health insurances (SHI) with data from population-based cancer registries can be used to obtain additional information on cancer that is missing in claims data and to assess the validity of SHI tumour diagnoses. This paper focuses on describing the specific requirements of German federal states for such data linkage., Materials and Methods: The Pharmacoepidemiological Research Database GePaRD at the Leibniz Institute for Prevention Research and Epidemiology - BIPS and six cancer registries were used as data sources. The logistically complex direct linkage was compared with a less complex indirect linkage. For this purpose, permission had to be obtained for GePaRD and for each cancer registry from the respective responsible authority., Results: Regarding the linkage of cancer registry data with GePaRD, the cancer registries showed profound differences in the modalities for data provision, ranging from a complete rejection to an uncomplicated implementation of linkage procedures., Discussion: In Germany, a consistent legal framework is needed to adequately enable the reuse and record linkage of personal health data for research purposes according to the FAIR principles. The new law on the consolidation of cancer registry data could provide a remedy regarding the linkage of cancer registry data with other data sources., (© 2021. The Author(s).)

Motivation: Record Linkage has versatile applications in real-world data analysis contexts, where several datasets need to be linked on the record level in the absence of any exact identifier connecting related records. An example are medical databases of patients, spread across institutions, that have to be linked on personally identifiable entries like name, date of birth or ZIP code. At the same time, privacy laws may prohibit the exchange of this personally identifiable information (PII) across institutional boundaries, ruling out the outsourcing of the record linkage task to a trusted third party. We propose to employ privacy-preserving record linkage (PPRL) techniques that prevent, to various degrees, the leakage of PII while still allowing for the linkage of related records., Results: We develop a framework for fault-tolerant PPRL using secure multi-party computation with the medical record keeping software Mainzelliste as the data source. Our solution does not rely on any trusted third party and all PII is guaranteed to not leak under common cryptographic security assumptions. Benchmarks show the feasibility of our approach in realistic networking settings: linkage of a patient record against a database of 10 000 records can be done in 48 s over a heavily delayed (100 ms) network connection, or 3.9 s with a low-latency connection., Availability and Implementation: The source code of the sMPC node is freely available on Github at https://github.com/medicalinformatics/SecureEpilinker subject to the AGPLv3 license. The source code of the modified Mainzelliste is available at https://github.com/medicalinformatics/MainzellisteSEL., Supplementary Information: Supplementary data are available at Bioinformatics online., (© The Author(s) 2020. Published by Oxford University Press.)

Background: The linkage of records across administrative databases has become a powerful tool to increase information available to undertake research and analytics in a privacy protective manner., Objective: The objective of this paper was to describe the data integration strategy used to link the Ontario Ministry of Children, Community and Social Services (MCCSS)-Social Assistance (SA) database with administrative health care data., Methods: Deterministic and probabilistic linkage methods were used to link the MCCSS-SA database (2003-2016) to the Registered Persons Database, a population registry containing data on all individuals issued a health card number in Ontario, Canada. Linkage rates were estimated, and the degree of record linkage and representativeness of the dataset were evaluated by comparing socio-demographic characteristics of linked and unlinked records., Results: There were a total of 2,736,353 unique member IDs in the MCCSS-SA database from the 1 st January 2003 to 31 st December 2016; 331,238 (12.1%) were unlinked (linkage rate = 87.9%). Despite 16 passes, most record linkages were obtained after 2 deterministic (76.2%) and 14 probabilistic passes (11.7%). Linked and unlinked samples were similar for most socio-demographic characteristics (i.e., sex, age, rural dwelling), except migrant status (non-migrant versus migrant) (standardized difference of 0.52). Linked and unlinked records were also different for SA program-specific characteristics, such as social assistance program, Ontario Works and Ontario Disability Support Program (standardized difference of 0.20 for each), data entry system, Service Delivery Model Technology only and both Service Delivery Model Technology and Social Assistance Management System (standardized difference of 0.53 and 0.52, respectively), and months on social assistance (standardized difference of 0.43)., Conclusions: Additional techniques to account for sub-optimal linkage rates may be required to address potential biases resulting from this data linkage. Nonetheless, the linkage between administrative social assistance and health care data will provide important findings on the social determinants of health., Competing Interests: Conflicts of interest: None to be declared.