Adam Wilcox, Shawn Grannis, Iris Zachary, Nicole Venterisv, Zachary Abrams, John Newland, Mohammad Beheshti, Lucinda Ham, Joshua Day, Jill S Barnholtz-Sloan
Privacy-preserving record linkage (PPRL) can improve the utility of clinical data for research and discovery by merging disparate data sources to provide a more complete record of a patient. We assess the performance of record linkage across two data sets consisting of cancer registry data and electronic health records (EHRs). Using two data sources-EHR extracts and records from the Missouri Cancer Registry (MCR)-we performed various validation exercises, including an audit by the MCR and a comparative evaluation using multiple matching algorithms. Results indicated substantial matching performance, with high recall and precision rates. We conclude that the refined data linkage process significantly supports enhanced research capabilities without compromising patient privacy, thereby enabling reliable data integration for clinical research in oncology.
{"title":"Evaluating Privacy-Preserving Record Linkage in Merging Cancer Registry Data and Electronic Health Records.","authors":"Adam Wilcox, Shawn Grannis, Iris Zachary, Nicole Venterisv, Zachary Abrams, John Newland, Mohammad Beheshti, Lucinda Ham, Joshua Day, Jill S Barnholtz-Sloan","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Privacy-preserving record linkage (PPRL) can improve the utility of clinical data for research and discovery by merging disparate data sources to provide a more complete record of a patient. We assess the performance of record linkage across two data sets consisting of cancer registry data and electronic health records (EHRs). Using two data sources-EHR extracts and records from the Missouri Cancer Registry (MCR)-we performed various validation exercises, including an audit by the MCR and a comparative evaluation using multiple matching algorithms. Results indicated substantial matching performance, with high recall and precision rates. We conclude that the refined data linkage process significantly supports enhanced research capabilities without compromising patient privacy, thereby enabling reliable data integration for clinical research in oncology.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 3","pages":"79-83"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12742408/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145850999","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The purpose of the workload and staffing study of hospital cancer registries conducted in 2024 was to update previous studies of workload and staffing guidelines. The population studied was composed of hospital cancer registries. Potential respondents for this study were hospital registry leads identified in the National Cancer Registrars Association (NCRA) membership database and their cancer registry staff. An online survey was sent to lead registrars along with directions for forwarding a separate cancer registrar survey to their staff. Postsurvey interviews were conducted with 11 experts in the field to review findings and discuss the future of the cancer registry workforce. There were 237 responses to the registry lead survey (RLS) and 290 responses to the cancer registrar survey (CRS). Results indicated a 22% increase in the mean budgeted full-time equivalents (FTEs) from 2019 in 2022; yet filled FTEs decreased slightly from 2019 to 2022. Registry leads reported that nearly half of their staff need additional training in data analysis and were very concerned about recruiting qualified staff, providing adequate compensation, and funding additional positions. Caseload continued to be the main predictor of staffing needs, as in the previous study. In staffing models, we found that for single-institution registries, for every 1,000 cases, staffing should increase by 1.8 to 2.1 FTEs. For multi-institution registries, staffing should increase by 1.6 to 1.9 FTEs for every 1,000 cases. Postsurvey interviewees were concerned about industry-wide vacancies and worker burnout. They mentioned contributing factors such as low wages, lack of recognition, isolated work, the lack of credentialed registrars, and pending retirements. They stressed that technological innovations and automation will not eliminate the registrar's role but will change it. These changes in registrar work may create more specialization in the role such as in data analytics and acting on real-time data and reporting. These changes may also create new career paths that would attract future students and workers to the cancer registry profession. Findings from this study may be useful for hospital registries to benchmark their own workload and staffing and to cancer registry organization leaders in planning for the future.
{"title":"Workload and Staffing Study of Hospital Cancer Registries.","authors":"Susan A Chapman, Laurie Hailer, Jacqueline Miller","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The purpose of the workload and staffing study of hospital cancer registries conducted in 2024 was to update previous studies of workload and staffing guidelines. The population studied was composed of hospital cancer registries. Potential respondents for this study were hospital registry leads identified in the National Cancer Registrars Association (NCRA) membership database and their cancer registry staff. An online survey was sent to lead registrars along with directions for forwarding a separate cancer registrar survey to their staff. Postsurvey interviews were conducted with 11 experts in the field to review findings and discuss the future of the cancer registry workforce. There were 237 responses to the registry lead survey (RLS) and 290 responses to the cancer registrar survey (CRS). Results indicated a 22% increase in the mean budgeted full-time equivalents (FTEs) from 2019 in 2022; yet filled FTEs decreased slightly from 2019 to 2022. Registry leads reported that nearly half of their staff need additional training in data analysis and were very concerned about recruiting qualified staff, providing adequate compensation, and funding additional positions. Caseload continued to be the main predictor of staffing needs, as in the previous study. In staffing models, we found that for single-institution registries, for every 1,000 cases, staffing should increase by 1.8 to 2.1 FTEs. For multi-institution registries, staffing should increase by 1.6 to 1.9 FTEs for every 1,000 cases. Postsurvey interviewees were concerned about industry-wide vacancies and worker burnout. They mentioned contributing factors such as low wages, lack of recognition, isolated work, the lack of credentialed registrars, and pending retirements. They stressed that technological innovations and automation will not eliminate the registrar's role but will change it. These changes in registrar work may create more specialization in the role such as in data analytics and acting on real-time data and reporting. These changes may also create new career paths that would attract future students and workers to the cancer registry profession. Findings from this study may be useful for hospital registries to benchmark their own workload and staffing and to cancer registry organization leaders in planning for the future.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 1","pages":"16-21"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12244491/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144627372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Letter from the Editor.","authors":"Nadine R Walker","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 2","pages":"29"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12636246/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145589046","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Improving Cancer Reporting Compliance Across Maryland.","authors":"Tyler Adamson","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 2","pages":"52"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12636243/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145589013","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Cara L Conner, Mersady C Redding, Emel Seker, Melody L Greer, Tremaine B Williams, Maryam Y Garza
<p><strong>Background: </strong>Clinical data registries provide a rich source of real-world data that can be leveraged by clinicians, researchers, and public health professionals to address some of the current health challenges faced in society today. The relative usefulness of a registry depends on the ability to gather data and the overall quality of the data. To assess existing datarelated processes, including barriers and facilitators to data collection and submission, we conducted an observational case study to evaluate sites submitting data to a prominent state-based trauma registry.</p><p><strong>Methods: </strong>A mixed-methods approach was undertaken to evaluate existing processes and barriers to data collection for the Arkansas Trauma Registry (ATR). A series of interviews and observations were conducted with trauma registry personnel from level I-IV trauma centers across the state of Arkansas to collect data on current data-related processes. To facilitate observations, a think-aloud protocol was used to gather keystroke-level modeling (KLM) data. Additional observational data (qualitative) were collected regarding site processes and workflows pertaining to the collection and submission of registry data to the ATR. Following the observations, informal, semi-structured interviews were conducted to assess the participants' perspectives on current data-related processes, potential barriers to data collection or submission, and any recommendations for improvement. All sessions were recorded, and de-identified transcripts and session notes were used for analysis. Quantitative analyses were performed on the KLM data derived from observations to determine time spent performing end-to-end registry-related activities. Qualitative data from interviews were reviewed and coded by 2 independent reviewers. The qualitative codings were adjudicated by the reviewers using a consensus-driven approach. Themes were then extrapolated to generate the final set of results.</p><p><strong>Results: </strong>Seven unique staff members (trauma registrars, coordinators, supervisors, and directors) participated in the study, having completed both observation and interview sessions. These participants were from 5 unique trauma centers (one level I, one level II, two level III, and one level IV). Through the observations, we were able to characterize the typical operational flow for level I-IV trauma centers participating in the ATR, confirming a primarily manual process was used across all sites. Furthermore, the KLM analysis demonstrated that, on average, site staff would need close to 26 total hours to identify, abstract, and transcribe a single, relatively complex trauma registry case (meaning all 288 registry data elements were captured). Results from interviews further emphasized the exhaustive nature of the current data collection processes across sites, regardless of trauma level classification. Five common themes were identified across all 7 interviews: da
{"title":"Data-Related Processes and Challenges at Level I-IV Trauma Centers in Arkansas: Results of a Mixed-Methods Case Study.","authors":"Cara L Conner, Mersady C Redding, Emel Seker, Melody L Greer, Tremaine B Williams, Maryam Y Garza","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Clinical data registries provide a rich source of real-world data that can be leveraged by clinicians, researchers, and public health professionals to address some of the current health challenges faced in society today. The relative usefulness of a registry depends on the ability to gather data and the overall quality of the data. To assess existing datarelated processes, including barriers and facilitators to data collection and submission, we conducted an observational case study to evaluate sites submitting data to a prominent state-based trauma registry.</p><p><strong>Methods: </strong>A mixed-methods approach was undertaken to evaluate existing processes and barriers to data collection for the Arkansas Trauma Registry (ATR). A series of interviews and observations were conducted with trauma registry personnel from level I-IV trauma centers across the state of Arkansas to collect data on current data-related processes. To facilitate observations, a think-aloud protocol was used to gather keystroke-level modeling (KLM) data. Additional observational data (qualitative) were collected regarding site processes and workflows pertaining to the collection and submission of registry data to the ATR. Following the observations, informal, semi-structured interviews were conducted to assess the participants' perspectives on current data-related processes, potential barriers to data collection or submission, and any recommendations for improvement. All sessions were recorded, and de-identified transcripts and session notes were used for analysis. Quantitative analyses were performed on the KLM data derived from observations to determine time spent performing end-to-end registry-related activities. Qualitative data from interviews were reviewed and coded by 2 independent reviewers. The qualitative codings were adjudicated by the reviewers using a consensus-driven approach. Themes were then extrapolated to generate the final set of results.</p><p><strong>Results: </strong>Seven unique staff members (trauma registrars, coordinators, supervisors, and directors) participated in the study, having completed both observation and interview sessions. These participants were from 5 unique trauma centers (one level I, one level II, two level III, and one level IV). Through the observations, we were able to characterize the typical operational flow for level I-IV trauma centers participating in the ATR, confirming a primarily manual process was used across all sites. Furthermore, the KLM analysis demonstrated that, on average, site staff would need close to 26 total hours to identify, abstract, and transcribe a single, relatively complex trauma registry case (meaning all 288 registry data elements were captured). Results from interviews further emphasized the exhaustive nature of the current data collection processes across sites, regardless of trauma level classification. Five common themes were identified across all 7 interviews: da","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 1","pages":"6-15"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12248252/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144627369","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This quiz is derived from the article, "Workload and Staffing Study of Hospital Cancer Registries" by Susan A. Chapman, PhD, MPH, RN, and coauthors. After reading the article and completing the quiz, participants will be able to: Recognize the need for updated workload and staffing data guidelinesDifferentiate the 2 surveys provided to the registry manager/lead and cancer registrarsDescribe the implications for the registry workforce based on the qualitative assessment of the study.
这个测验来自Susan A. Chapman博士、公共卫生硕士、注册护士及其合作者的文章“医院癌症登记处的工作量和人员配置研究”。在阅读文章并完成测试后，参与者将能够：认识到更新工作量和人员数据指南的必要性；区分提供给注册管理人员/主管和癌症注册管理人员的两项调查；根据研究的定性评估描述对注册管理人员的影响。
{"title":"<i>Journal of Registry Management</i> Continuing Education Quiz-SPRING 2025: WORKLOAD AND STAFFING STUDY OF HOSPITAL CANCER REGISTRIES.","authors":"Vida Cari","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This quiz is derived from the article, \"Workload and Staffing Study of Hospital Cancer Registries\" by Susan A. Chapman, PhD, MPH, RN, and coauthors. <b>After reading the article and completing the quiz, participants will be able to:</b> Recognize the need for updated workload and staffing data guidelinesDifferentiate the 2 surveys provided to the registry manager/lead and cancer registrarsDescribe the implications for the registry workforce based on the qualitative assessment of the study.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 1","pages":"23"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12244488/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144627368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Angela Pallangyo, Onstard Mashauri, Salum Kalonge, Maryam Amour, Alex Mremi, James S Ngocho, Emmanuel Balandya, Gideon Kwesigabo, Benson Kidenya, Stephen E Mshana, Eligius F Lyamuya, Bruno F Sunguya, John Bartlett, Blandina T Mmbaga
Background: The burden of cancer in sub-Saharan African countries is escalating with a rising Human Immunodeficiency Virus (HIV) prevalence. However, information about the burden of HIV on cancer epidemiology is scarce. Specifically, little is known about HIV infection among the cancer cases registered in the Kilimanjaro Population Cancer Registry (KCR) despite the presence of this infection in Tanzania. Thus, our study aimed to assess the burden of HIV in cancer patients by evaluating HIV serostatus information among recorded cases of malignancies in the KCR.
Methods: This secondary data analysis examined records of all cancer cases registered in the KCR from January 2018 through December 2022 to assess the status of HIV infection among the cancer cases. Variables assessed were demographic information, type of cancer, and HIV serostatus. Proportions were analyzed using descriptive data.
Results: A total of 5,508 cancer cases were recorded from 2018 through 2022. HIV serostatus was documented in 4.8% (226/5,508) of the cancer cases, 68% of which were HIV seropositive with a slight female predominance (male-to-female ratio of 1:1.7). Cervical cancer was the leading malignancy (18%) with recorded HIV serostatus. Patients aged 18-50 years and females had the highest prevalence of HIV infection (64.6% and 63.5%).
Conclusion: HIV infection is still underreported among cancer patients in the cancer registry of the Kilimanjaro region with only 4.8% of malignancies registered in KCR having a documented HIV serostatus. HIV serostatus was mostly documented in AIDS-defining cancers. Thus, efforts to support HIV counseling and testing among cancer patients should be made, as this will also affect treatment plans and monitoring.
{"title":"Burden of HIV among Patients Undergoing Cancer Treatment: Analysis of Population Cancer Registry in Northern Tanzania.","authors":"Angela Pallangyo, Onstard Mashauri, Salum Kalonge, Maryam Amour, Alex Mremi, James S Ngocho, Emmanuel Balandya, Gideon Kwesigabo, Benson Kidenya, Stephen E Mshana, Eligius F Lyamuya, Bruno F Sunguya, John Bartlett, Blandina T Mmbaga","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>The burden of cancer in sub-Saharan African countries is escalating with a rising Human Immunodeficiency Virus (HIV) prevalence. However, information about the burden of HIV on cancer epidemiology is scarce. Specifically, little is known about HIV infection among the cancer cases registered in the Kilimanjaro Population Cancer Registry (KCR) despite the presence of this infection in Tanzania. Thus, our study aimed to assess the burden of HIV in cancer patients by evaluating HIV serostatus information among recorded cases of malignancies in the KCR.</p><p><strong>Methods: </strong>This secondary data analysis examined records of all cancer cases registered in the KCR from January 2018 through December 2022 to assess the status of HIV infection among the cancer cases. Variables assessed were demographic information, type of cancer, and HIV serostatus. Proportions were analyzed using descriptive data.</p><p><strong>Results: </strong>A total of 5,508 cancer cases were recorded from 2018 through 2022. HIV serostatus was documented in 4.8% (226/5,508) of the cancer cases, 68% of which were HIV seropositive with a slight female predominance (male-to-female ratio of 1:1.7). Cervical cancer was the leading malignancy (18%) with recorded HIV serostatus. Patients aged 18-50 years and females had the highest prevalence of HIV infection (64.6% and 63.5%).</p><p><strong>Conclusion: </strong>HIV infection is still underreported among cancer patients in the cancer registry of the Kilimanjaro region with only 4.8% of malignancies registered in KCR having a documented HIV serostatus. HIV serostatus was mostly documented in AIDS-defining cancers. Thus, efforts to support HIV counseling and testing among cancer patients should be made, as this will also affect treatment plans and monitoring.</p>","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 2","pages":"30-34"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12636237/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145589019","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rana Bayakly, Chrissy McNamara, Elizabeth Blankenship, Nathan Hunter, Praneetha Gatta
{"title":"The Georgia Cancer Registry Database Improves Local Cancer Data Access.","authors":"Rana Bayakly, Chrissy McNamara, Elizabeth Blankenship, Nathan Hunter, Praneetha Gatta","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 3","pages":"99"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12742411/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145850960","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"A Comparative Analysis of Survival Based on Body Mass Index at Diagnosis in Non-Small Cell Lung Cancer Patients.","authors":"Boyun Jang, Sangwon Lee, Sohee Park","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":39246,"journal":{"name":"Journal of registry management","volume":"52 3","pages":"85-89"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12742409/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145850908","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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