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 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.

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 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

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.

Ascertainment and evaluation of interval cancers in population-based mammography screening programmes: a collaborative study in four European centres

2005 ◽  
Vol 12 (1) ◽  
pp. 43-49 ◽  
Author(s):  
Sven Törnberg ◽  
Mary Codd ◽  
Vitor Rodrigues ◽  
Nereo Segnan ◽  
Antonio Ponti
Keyword(s):  
Health Care ◽  
Cancer Registry ◽  
Mammography Screening ◽  
Breast Cancer Incidence ◽  
Collaborative Study ◽  
Interval Cancer ◽  
Cancer Registries ◽  
Population Based ◽  
Registry Data ◽  
Cancer Registry Data

Objectives: The purpose of the present study was to estimate the interval cancer (IC) rates in four population-based mammography screening programmes in four countries with different health-care environments, different access to cancer registry data, and different age groupsof women invited. Setting: The screening programmes in Coimbra (Portugal), Dublin (Ireland), Stockholm (Sweden), and Turin (Italy) participated in the study. Methods: All cancer cases were searched for in cancer registries. IC rates and other outcome measures from the screeningprogrammes were estimated and compared between the centres. Poisson regression model was used to estimate the proportional incidence based on IC rate in relation to expected total breast cancer incidence rate in the absence of screening. Results: There was a more than tenfold difference inthe number of invited women at the first round between the involved centres. The IC rates varied between 4.3 and 23.8 per 10,000 women screened. The levels of IC rates in relation to the estimated background incidence varied from 0.35 up to 0.46 depending on age groups involved in the programme,but did not differ significantly between three of the four involved centres. Conclusions: IC rates were quite similar between three of the four centres despite the differences in target population, invited ages, length of building-up of the programmes and different health-care organizations.Different access to complete cancer registry data is likely to explain the lower IC rates in the fourth centre.

scholarly journals Accuracy of kidney cancer diagnosis and histological subtype within Canadian cancer registry data

2017 ◽  
Vol 11 (9) ◽  
pp. E326-9
Author(s):  
Jeffrey G. Himmelman ◽  
Jennifer Merrimen ◽  
Kara Matheson ◽  
Chris Theriault ◽  
Lori A. Wood
Keyword(s):  
Cancer Registry ◽  
Clear Cell ◽  
Cancer Registries ◽  
Population Based ◽  
Registry Data ◽  
Pathology Report ◽  
Study Cohort ◽  
Histological Subtype ◽  
Cancer Statistics ◽  
Pathology Reports

Introduction: Provincial/territorial cancer registries (PTCRs) are the mainstay for Canadian population-based cancer statistics. Each jurisdiction captures this data in a population-based registry, including the Nova Scotia Cancer Registry (NSCR). The goal of this study was to describe data from the NSCR regarding renal cell carcinoma (RCC) pathology subtype and method of diagnosis and compare it to the actual pathology reports to determine the accuracy of diagnosis and histological subtype assignment.Methods: This retrospective analysis included patients diagnosed with RCC in the NSCR from 2006‒2010 with an ICD-O-3 code C64.9 seen or treated in the largest NS health district. From the NSCR, method of diagnosis and pathological diagnosis was recorded. All diagnoses of non-clear-cell RCC (nonccRCC) from NSCR were compared to the actual pathology report for descriptive comparison and reasons for discordance.Results: 723 patients make up the study cohort. 81.3% of patients were diagnosed by nephrectomy, 11.1% radiography, 6.9 % biopsy, and 0.7% autopsy. By NSCR data, 52.8% had clear-cell (ccRCC), 20.5% RCC not otherwise specified (NOS), 12.7% papillary, 4% chromophobe, and the rest had other nonccRCC subtypes. By pathology reports, 69.5% had clear-cell, 15% papillary, 5% chromophobe, only 2.7% RCC NOS. There was a discordance rate of 15.4% between NSCR data and diagnosis from pathology report. Reasons for discordance were not enough information by the pathologist in 45.5%, misinterpretation of report by data coder in 22.2%, and true coding error in 32.3%.Conclusions: When using PTCR for RCC incidence data, it is important to understand how the diagnosis is made, as not all are based on pathological confirmation; in this cohort 11% were based on radiology. One must also be aware that clear-cell and non-clearcell subtypes may differ between the PTCR data and pathology reports. In this study, ccRCC made up 52.8% of the registry diagnoses, but increased to 69.6% on pathology report review. Use of synoptic reporting and ongoing education may improve accuracy of registry data.

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.

P3352Telemedicine transcends national boundaries in quest of creating a behemoth ami program

2019 ◽  
Vol 40 (Supplement_1) ◽  
Author(s):  
S Mehta ◽  
R Botelho ◽  
F Fernandez ◽  
F Feres ◽  
A Abizaid ◽  
...  
Keyword(s):  
Community Health Centers ◽  
Developed Countries ◽  
Population Based ◽  
Primary Pci ◽  
Small Community ◽  
Hub And Spoke ◽  
Web Based ◽  
National Boundaries ◽  
Intelligent Tools ◽  
Time Of Presentation

Abstract Background The Latin America Telemedicine Infarct Network (LATIN) has exploited the remarkable competence of telemedicine for remote guidance. In doing so, LATIN created a mammoth population-based AMI network that employed experts located several hundred miles away to guide the reperfusion strategies for almost 800,000 screened patients. In this pioneering project, telemedicine was initially utilized to guide AMI management within national confines. We speculated whether LATIN telemedicine navigation could outstrip countrywide borders. Purpose To maximally harness the vast possibilities of telemedicine for improving AMI care. Methods During its pilot phase, LATIN began as a hub and spoke, AMI system in Colombia where 20 spokes (small community health centers and rural clinics) were configured with 3 hubs that could perform Primary PCI. These sites were linked through web-based connectivity. Expert cardiologists, located 50–250 miles away in Bogota, Colombia, used sophisticated telemedicine platforms for urgent EKG diagnosis and teleconsultation of the entire AMI process. Based upon the duration of chest pain and travel time to the hub, these experts guided patients through guideline-based strategies of thrombolysis, pharmaco invasive management or primary PCI. Efficiency of the telemedicine process was measured with the new metric of time to telemedicine diagnosis (TTD). Cloud computing, GPS navigation, and numerous business intelligent tools were gradually incorporated into LATIN telemedicine. As systems became more scalable, the program was expanded to Brazil, where LATIN flourished. Over the last 18 months, LATIN telemedicine capabilities have been pressed across national boundaries. Presently, all 82 LATIN centers in Mexico are guided by experts located in Bogota, Colombia and the 7 Argentina centers channeled through Santiago, Chile. Results 784,947 patients were screened for AMI at 350 LATIN centers (Brazil 143, Colombia 118, Mexico 82, Argentina 7). Navigation pathways are depicted in the attached figure. TTD remains extremely low in all four countries, and comparable efficiency and tele-accuracy have been achieved. With expanded geographic reach, 8,448 (1.08%) patients were diagnosed with STEMI and 3,911 (46.3%) urgently reperfused, including 3,049 (78%) with Primary PCI. Time to TTD ranged between 2.8 to 5.8 minutes, with a mean of 3.5 min. Tele-accuracy was 98.5%, D2B 51 min, and in-hospital mortality 5.2%. Various other comparative metrics for the 4 countries are being gathered and will be available at the time of presentation. Conclusions LATIN demonstrates the robust ability of telemedicine to transcend national boundaries to guide AMI management. This strategy can be adopted in under-developed countries in Asia and Africa to provide an umbrella of AMI care for the millions of disadvantaged patients.

scholarly journals Incidence and Trends of the Leading Cancers with Elevated Incidence Among American Indian and Alaska Native Populations, 2012–2016

2020 ◽  
Author(s):  
Stephanie C Melkonian ◽  
Hannah K Weir ◽  
Melissa A Jim ◽  
Bailey Preikschat ◽  
Donald Haverkamp ◽  
...  
Keyword(s):  
American Indian ◽  
Cancer Incidence ◽  
Alaska Native ◽  
Cancer Registries ◽  
Population Based ◽  
Incidence Rates ◽  
Breast Cancers ◽  
Age Adjusted Rates ◽  
Incident Cases ◽  
Hispanic White

Abstract Cancer incidence varies among American Indian and Alaska Native (AI/AN) populations, as well as between AI/AN and White populations. This study examined trends for cancers with elevated incidence among AI/AN compared with non-Hispanic White populations and estimated potentially avoidable incident cases among AI/AN populations. Incident cases diagnosed during 2012–2016 were identified from population-based cancer registries and linked with the Indian Health Service patient registration databases to improve racial classification of AI/AN populations. Age-adjusted rates (per 100,000) and trends were calculated for cancers with elevated incidence among AI/AN compared with non-Hispanic White populations (rate ratio >1.0), by region. Trends were estimated using joinpoint regression analyses. Expected cancers were estimated by applying age-specific cancer incidence rates among non-Hispanic White populations to population estimates for AI/AN populations. Excess cancer cases among AI/AN populations were defined as observed minus expected cases. Liver, stomach, kidney, lung, colorectal and female breast cancers had higher incidence rate among AI/AN populations across most regions. Between 2012 and 2016, nearly 5,200 excess cancers were diagnosed among AI/AN populations, with the largest number of excess cancers (1,925) occurring in the Southern Plains region. Culturally informed efforts may reduce cancer disparities associated with these and other cancers among AI/AN populations.

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