scholarly journals Interoperability of population-based patient registries

2020 ◽  
Author(s):  
Nicholas Nicholson ◽  
Andrea Perego
Keyword(s):  
Open Data ◽  
Secondary Data ◽  
Cancer Registries ◽  
Population Based ◽  
European Population ◽  
Registry Data ◽  
Patient Registry ◽  
Data Sets ◽  
Patient Registries ◽  
Data Elements

Enabling full interoperability within and between population-based patient-registry domains would open up access to a rich and unique source of health data for secondary data usage. Previous attempts to tackle patient-registry interoperability have met with varying degrees of success, but a unifying solution remains elusive. The purpose of this paper is to show by practical example how a solution is attainable via the implementation of an existing framework based of the concept of federated, semantic metadata registries. One important feature motivating the use of this framework is that it can be implemented gradually and independently within each patient-registry domain. By employing linked open data principles, the framework extends the ISO/IEC 11179 standard to provide both syntactic and semantic interoperability of data elements with the means of specifying automated extraction scripts for retrieval of data from different registry content models. The examples provided address the domain of European population-based cancer registries to demonstrate the feasibility of the approach. One of the examples shows how quick gains are derivable by allowing retrieval of aggregated core data sets. The other examples show how aggregated full sets of data and record-level data might also be retrieved from each local registry. An infrastructure of patient-registry domains adhering to the principles of the framework would provide the semantic contexts and inter-linkage of data necessary for automated search and retrieval of registry data. It would thereby also lay the foundation for making registry data serviceable to artificial intelligence (AI) applications.

Trusted data spaces as a viable and sustainable solution for networks of population-based patient registries (Preprint)

2021 ◽  
Author(s):  
Nicholas Charles Nicholson ◽  
Sandra Caldeira ◽  
Artur Furtado ◽  
Ciaran Nicholl
Keyword(s):  
Cancer Registries ◽  
Population Based ◽  
Registry Data ◽  
Patient Registry ◽  
Effective Control ◽  
Patient Registries ◽  
Accurate Comparison ◽  
Organisational Model ◽  
National Boundaries ◽  
Supranational Level

BACKGROUND Population-based patient registries are entities that collect summary patient data from a well-defined population. Their main function is the monitoring and surveillance of a particular disease within their population catchment area, but they are also an important data source used in epidemiology. Comparing indicators across national boundaries brings considerable extra benefit to registries’ data, especially in regions where supranational initiatives are or could be coordinated to leverage good practices; this is particularly important for the European Union. Stricter data-protection laws however can unintentionally hamper the efforts of data harmonization to ensure the removal of statistical bias in the individual data sets, thereby compromising the integrated value of registries’ data. A new paradigm is required to ensure registries can operate in an environment that is not unnecessarily restrictive and allow accurate comparison of data for better ascertaining measures and practices most conducive to the public health of societies. OBJECTIVE To propose a solution towards a viable and sustainable model for the integration of registry data at supranational level. METHODS The pan-European organisational model of cancer registries, owing to its long and successful establishment, was taken as a good starting point from which to propose a sustainable, generic model for patient registries. Drawbacks to the model, particularly with respect to scalability and resourcing, were addressed in an adapted model. RESULTS An inter-registry organisational model based along the lines of the European Network of Cancer Registries was adapted to tackle the governance and resourcing aspects essential for a generic patient-registry model. The adapted model is a proposal for how patient registries can inter operate to ensure harmonisation and quality of data for accurate comparison at supranational level. CONCLUSIONS In view of the challenges relating to accurate and unbiased inter-comparison of population-based registry data across national boundaries for disease-surveillance purposes, a sustainable, generic patient-registry model is proposed. Integrating registry data is important for understanding progression and trends of the most prevalent diseases as well as for ascertaining effective control measures. The model promises a valuable data resource for epidemiological research, whilst providing a closely regulated environment for the processing of pseudonomised patient summary data on a broader scale than has hitherto been possible.

scholarly journals Data from Population-based Cancer Registration for Secondary Data Analysis: Methodological Challenges and Perspectives

2019 ◽  
Vol 82 (S 01) ◽  
pp. S62-S71 ◽  
Author(s):  
Volker Arndt ◽  
Bernd Holleczek ◽  
Hiltraud Kajüter ◽  
Sabine Luttmann ◽  
Alice Nennecke ◽  
...  
Keyword(s):  
Data Analysis ◽  
Cancer Registry ◽  
Secondary Data ◽  
Cancer Registries ◽  
Population Based ◽  
Secondary Data Analysis ◽  
Data Availability ◽  
Registry Data ◽  
Cancer Registration ◽  
Cancer Registry Data

AbstractPopulation-based cancer registries have a long-standing role in cancer monitoring. Scientific use of cancer registry data is one important purpose of cancer registration, but use of cancer registry data is not restricted to cancer registries. Cancer registration in Germany is currently heading towards population-based collection of detailed clinical data. This development together with additional options for record linkage and long-term follow-up will offer new opportunities for health services and outcome research. Both regional population-based registries and the German Centre for Cancer Registry Data (ZfKD) at the Robert Koch-Institute as well as international cancer registries and consortia or organizations may provide external researchers access to individual or aggregate level data for secondary data analysis. In this review, we elaborate on the access to cancer registry data for research purposes, availability of specific data items, and options for data linkage with external data sources. We also discuss as well as on limitations in data availability and quality, and describe typical biases in design and analysis.

scholarly journals Assessing the evidentiary value of secondary data analyses: A commentary on Gangestad, Dinh, Grebe, Del Giudice, and Thompson (2019)

2019 ◽  
Author(s):  
Benedict C Jones ◽  
Lisa Marie DeBruine ◽  
Urszula M marcinkowska
Keyword(s):  
Scientific Knowledge ◽  
Critical Role ◽  
Open Data ◽  
Secondary Data ◽  
Original Study ◽  
Hypothesis Generation ◽  
Data Sets ◽  
Data Analyses ◽  
Made In

Secondary data analyses (analyses of open data from published studies) can play a critical role in hypothesis generation and in maximizing the contribution of collected data to the accumulation of scientific knowledge. However, assessing the evidentiary value of results from secondary data analyses is often challenging because analytical decisions can be biased by knowledge of the results of (and analytical choices made in) the original study and by unacknowledged exploratory analyses of open data sets (Scott & Kline, 2019; Weston, Ritchie, Rohrer, & Przybylski, 2018). Using the secondary data analyses reported by Gangestad et al. (this issue) as a case study, we outline several approaches that, if implemented, would allow readers to assess the evidentiary value of results from secondary data analyses with greater confidence.

scholarly journals Changing roles of population-based cancer registries in Australia

2015 ◽  
Vol 39 (4) ◽  
pp. 425 ◽  
Author(s):  
David Roder ◽  
Nicola Creighton ◽  
Deborah Baker ◽  
Richard Walton ◽  
Sanchia Aranda ◽  
...  
Keyword(s):  
Health System ◽  
Administrative Data ◽  
Cancer Incidence ◽  
Interval Cancer ◽  
Cancer Registries ◽  
Population Based ◽  
Registry Data ◽  
Multiple Primary Cancers ◽  
Clinical Quality ◽  
Cancer Data

Registries have key roles in cancer incidence, mortality and survival monitoring and in showing disparities across the population. Incidence monitoring began in New South Wales in 1972 and other jurisdictions soon followed. Registry data are used to evaluate outcomes of preventive, screening, treatment and support services. They have shown decreases in cancer incidence following interventions and have been used for workforce and other infrastructure planning. Crude markers of optimal radiotherapy and chemotherapy exist and registry data are used to show shortfalls against these markers. The data are also used to investigate cancer clusters and environmental concerns. Survival data are used to assess service performance and interval cancer data are used in screening accreditation. Registries enable determination of risk of multiple primary cancers. Clinical quality registries are used for clinical quality improvement. Population-based cancer registries and linked administrative data complement clinical registries by providing high-level system-wide data. The USA Commission on Cancer has long used registries for quality assurance and service accreditation. Increasingly population-based registry data in Australia are linked with administrative data on service delivery to assess system performance. Addition of tumour stage and other prognostic indicators is important for these analyses and is facilitated by the roll-out of structured pathology reporting. Data linkage with administrative data, following checks on the quality of these data, enables assessment of patterns of care and other performance indicators for health-system monitoring. Australian cancer registries have evolved and increasingly are contributing to broader information networks for health system management.

scholarly journals Childhood obesity in Europe: a growing concern

2001 ◽  
Vol 4 (1a) ◽  
pp. 109-116 ◽  
Author(s):  
MBE Livingstone
Keyword(s):  
Childhood Obesity ◽  
Population Based ◽  
European Population ◽  
Data Sets ◽  
Older Children ◽  
Marked Variability ◽  
Paediatric Obesity ◽  
Socioeconomic Composition ◽  
Definition Of ◽  
European Youth

AbstractEstimation of the prevalence and secular trends in paediatric obesity in Europe is impeded by methodological problems in the definition of obesity and the paucity of data sets that mirror the demographic, cultural and socioeconomic composition of the European population. The available prevalence data show that paediatric obesity is increasing throughout Europe but the patterns vary with time, age, sex and geographical region. The highest rates of obesity are observed in eastern and southern European countries. Even within countries there may be marked variability in the rates of obesity. It is unclear whether these trends are a simple consequence of an overall increase in fatness in Europe or whether there may be sub-groups of children who, at certain ages, are either particularly susceptible to environmental challenges or are selectively exposed to such challenges. In addition to the general increase in adiposity in European youth, there is also evidence of an increasing degree of obesity, particularly in older children and adolescents. No definite conclusions can be made about the respective contribution of energy intake and physical activity to the increasing prevalence of obesity. Changing demographic and social circumstances are linked to childhood obesity but it is highly unlikely that these interact in similar ways in the genesis of obesity in different individuals and population groups. In conclusion, the limited understanding of the variability in susceptibility to obesity in European youth provides powerful justification for the development of preventive strategies which are population based rather than selectively targeted at high-risk children.

scholarly journals Web-based interactive mapping from data dictionaries to ontologies, with an application to cancer registry

2020 ◽  
Vol 20 (S10) ◽  
Author(s):  
Shiqiang Tao ◽  
Ningzhou Zeng ◽  
Isaac Hands ◽  
Joseph Hurt-Mueller ◽  
Eric B. Durbin ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Data Entry ◽  
Cancer Registries ◽  
The State ◽  
Registry Data ◽  
Data Dictionary ◽  
Web Based ◽  
Cancer Registry Data ◽  
Interactive Mapping ◽  
Data Elements

Abstract Background The Kentucky Cancer Registry (KCR) is a central cancer registry for the state of Kentucky that receives data about incident cancer cases from all healthcare facilities in the state within 6 months of diagnosis. Similar to all other U.S. and Canadian cancer registries, KCR uses a data dictionary provided by the North American Association of Central Cancer Registries (NAACCR) for standardized data entry. The NAACCR data dictionary is not an ontological system. Mapping between the NAACCR data dictionary and the National Cancer Institute (NCI) Thesaurus (NCIt) will facilitate the enrichment, dissemination and utilization of cancer registry data. We introduce a web-based system, called Interactive Mapping Interface (IMI), for creating mappings from data dictionaries to ontologies, in particular from NAACCR to NCIt. Method IMI has been designed as a general approach with three components: (1) ontology library; (2) mapping interface; and (3) recommendation engine. The ontology library provides a list of ontologies as targets for building mappings. The mapping interface consists of six modules: project management, mapping dashboard, access control, logs and comments, hierarchical visualization, and result review and export. The built-in recommendation engine automatically identifies a list of candidate concepts to facilitate the mapping process. Results We report the architecture design and interface features of IMI. To validate our approach, we implemented an IMI prototype and pilot-tested features using the IMI interface to map a sample set of NAACCR data elements to NCIt concepts. 47 out of 301 NAACCR data elements have been mapped to NCIt concepts. Five branches of hierarchical tree have been identified from these mapped concepts for visual inspection. Conclusions IMI provides an interactive, web-based interface for building mappings from data dictionaries to ontologies. Although our pilot-testing scope is limited, our results demonstrate feasibility using IMI for semantic enrichment of cancer registry data by mapping NAACCR data elements to NCIt concepts.

scholarly journals Ensuring confidentiality and safety of cancer registry data in Kumasi, Ghana

2017 ◽  
Vol 9 (1) ◽  
Author(s):  
Dennis O. Laryea ◽  
Fred K. Awittor
Keyword(s):  
Data Management ◽  
Cancer Registry ◽  
Data Entry ◽  
Cancer Registries ◽  
Population Based ◽  
Control Measures ◽  
Registry Data ◽  
Data Sources ◽  
Strict Adherence ◽  
Confidentiality Agreement

ObjectiveTo discuss the implementation of confidentiality practices at theKumasi Cancer Registry.IntroductionCancer registration involves collecting information on patientswith cancer. Population-based cancer registries in particular areuseful in estimating the disease burden and to inform the institutionof prevention and control measures. Collecting personal informationon patients with cancer requires strict adherence to principles ofconfidentiality to ensure the safety of the collected data. Failure mayhave legal and medical implications. The Kumasi Cancer Registrywas established as a population-based cancer Registry in 2012. Theregistry collects data on cases of cancer occurring among residentsof the Kumasi Metropolitan area of Ghana. Issues bordering onconfidentiality were an integral part of the establishment of theregistry. We discuss the implementation of confidentiality plansduring the four years of existence of the Kumasi Cancer Registry.MethodsThe registry has a designed abstraction form which is used to collectdata. Data sources for the Registry are all major hospitals in Kumasiproviding cancer treatment services. Data sources also include privatepathology laboratories and the Births and Deaths Registry. Trainedresearch assistants collect data from the folders of patients. This isfollowed by coding and then entering into the Canreg 5 software.Coded and entered into the Canreg5 software for management andanalysis. After data entry, the forms are filed in order of registrynumbers as generated by the canreg5 software for easy reference.ResultsConfidentiality of KsCR data is ensured through the followingmeasures. The signing of a confidentiality agreement by all registrystaff. The confidentiality agreement spells out terms for the releaseof data to third parties in particular but even staff of the variousfacilities. The agreement also spells out the consequences of a breachof any of the clauses. No direct contact is made with patients duringthe process of abstraction of data by registrars. The data abstractionforms are kept in a secured safe in the registry office. The computersthat house the registry data are password enabled and are changedon a regular basis to ensure security. The Canreg5 software usedfor electronic data management also has individual profiles withpasswords for all registrars and supervisors. The scope of accessto Canreg data is limited by the profile status of the respectivestaff members. Supervisors have full access to all data includingsummarized reports. Registrars have limited access mostly restrictedto data entry. Access to the registry office is restricted to registry staffand other personnel authorized by the Registry Manager or Director.An established Registry Advisory Board is responsible for assessingrequests and approval of data from the registry. Where files have tobe sent electronically, they are password protected and sent in severalparts in separate emails.ConclusionsDespite the potential challenges to maintaining confidentialityof data in developing outcries, evidence from four years of cancerdata management in Kumasi suggests stringent measure can ensureconfidentiality. The use of multiple measures to ensure confidentialityis essential in surveillance data management

Evaluation of Research Accessibility and Data Elements of HIV Registries

2019 ◽  
Vol 17 (4) ◽  
pp. 258-265
Author(s):  
Craig S. Mayer ◽  
Nick Williams ◽  
Kin Wah Fung ◽  
Vojtech Huser
Keyword(s):  
Registry Data ◽  
Collection System ◽  
Patient Registries ◽  
Common Data Elements ◽  
Health Records ◽  
Real World Evidence ◽  
Data Elements ◽  
Research Contract ◽  
Term Data

Background:: Patient registries represent a long-term data collection system that is a platform for performing multiple research studies to generate real-world evidence. Many of these registries use common data elements (CDEs) and link data from Electronic Health Records. Objective:: This study evaluated HIV registry features that contribute to the registry’s usability for retrospective analysis of existing registry data or new prospective interventional studies. Methods:: We searched PubMed and ClinicalTrials.gov (CTG) to generate a list of HIV registries. We used the framework developed by the European Medical Agency (EMA) to evaluate the registries by determining the presence of key research features. These features included information about the registry, request and collaboration processes, and available data. We acquired data dictionaries and identified CDEs. Results: We found 13 HIV registries that met our criteria, 11 through PubMed and 2 through CTG. The prevalence of the evaluated features ranged from all 13 (100%) having published key registry information to 0 having a research contract template. We analyzed 6 data dictionaries and identified 14 CDEs that were present in at least 4 of 6 (66.7%) registry data dictionaries. Conclusion:: The importance of registries as platforms for research data is growing and the presence of certain features, including data dictionaries, contributes to the reuse and secondary research capabilities of a registry. We found some features such as collaboration policies were in the majority of registries while others such as, ethical support, were in a few and are more for future development.

CLL/SLL Is More Common Than Registry Incidence Suggests: A Population-Based Study in Manitoba, Canada.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1334-1334 ◽  
Author(s):  
Matthew D. Seftel ◽  
Donna Hewitt ◽  
Hui Zhang ◽  
Donna Turner ◽  
Spencer Gibson ◽  
...  
Keyword(s):  
Flow Cytometry ◽  
Cancer Registry ◽  
Census Data ◽  
Tertiary Care ◽  
Cancer Registries ◽  
Population Based ◽  
Lymphocytic Leukemia ◽  
Registry Data ◽  
Population Based Study ◽  
Cancer Registry Data

Abstract Background: The exact incidence of chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) is unknown. In the appropriate clinical setting, peripheral blood immunophenotyping is often sufficient for diagnosis. Cancer registries that rely only on histological or cytological reporting may inaccurately estimate the incidence of CLL/SLL. The province of Manitoba, with a population of 1.2 million people, has a centralized flow cytometry service as well as a provincial cancer registry. We thus had the opportunity to use these large databases to describe the demographic and clinical patterns of CLL/SLL. This has enabled us to test the hypothesis that registry data underestimates the incidence of this disease. Methods: All patients diagnosed with CLL/SLL between January 1, 1998 and December 31, 2003 were obtained from the Manitoba cancer registry and the central flow cytometry database. Additional clinical characteristics were obtained from a chart review. Results: 491 patients were diagnosed by flow cytometry. In contrast, cancer registry data reported 345 patients with CLL/SLL, 131 (38%) of which were diagnosed in tertiary care centres. Thus, 146 (30%) patients were not known to the provincial cancer registry. Median age of pts was 71 years (range, 24–97). Based on 2001 Canadian census data, the crude incidence of CLL/SLL in Manitoba is estimated to be 7 per 100 000 persons. Other demographic and clinical data of this population-based study will be presented. Conclusion: By incorporating diagnostic immunophenotyping, the incidence of CLL/SLL appears to be higher than that reported by a large Canadian cancer registry. This observation may apply to other local and national jurisdictions, and should be studied further.

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