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

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

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

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-020-01288-7 ◽

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.

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

Blood ◽

10.1182/blood.v106.11.1334.1334 ◽

2005 ◽

Vol 106 (11) ◽

pp. 1334-1334 ◽

Cited By ~ 1

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

Journal of Medical Screening ◽

10.1258/0969141053279077 ◽

2005 ◽

Vol 12 (1) ◽

pp. 43-49 ◽

Cited By ~ 16

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.

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

Canadian Urological Association Journal ◽

10.5489/cuaj.4269 ◽

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.

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The Introduction of Hospital-Based Cancer Registries in Queensland

Australian Medical Record Journal ◽

10.1177/183335838901900103 ◽

1989 ◽

Vol 19 (1) ◽

pp. 7-9 ◽

Cited By ~ 1

Author(s):

Sue Walker ◽

Sheree Lloyd ◽

Josie Parisi ◽

Sari Sirvio

Keyword(s):

Data Management ◽

Medical Record ◽

Cancer Registry ◽

Health Department ◽

Cancer Registries ◽

Population Based ◽

Support Network ◽

Cancer Data ◽

Cancer Registry Data ◽

Area Of Interest

The management of cancer data is an expanding area of interest and employment for medical record administrators in Queensland. This is largely due to the software package and support network for hospital-based cancer registries that has been developed by the Data Management Unit of the Epidemiology and Prevention Unit in the State Health Department. The package is offered to any hospital interested in setting up and maintaining their own cancer data base and is completely compatible with the information requirements of the Queensland population-based registry. This paper describes the development of a hospital-based cancer registry system and the involvement of medical record administrators in cancer registry data management. (AMRJ 19(1), 6–8).

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

Das Gesundheitswesen ◽

10.1055/a-1009-6466 ◽

2019 ◽

Vol 82 (S 01) ◽

pp. S62-S71 ◽

Cited By ~ 1

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.

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