Information Management in Cancer Registries: Evaluating the Needs for Cancer Data Collection and Cancer Research

Authors

  • Iris Zachary University of Missouri, Health Management and Informatics; MU Informatics Institute; Missouri Cancer Registry and Research Center
  • Suzanne A Boren University of Missouri, Health Management and Informatics; MU Informatics Institute
  • Eduardo Simoes University of Missouri, Health Management and Informatics; MU Informatics Institute; Missouri Cancer Registry and Research Center
  • Jeannette Jackson-Thompson University of Missouri, Health Management and Informatics; MU Informatics Institute; Missouri Cancer Registry and Research Center
  • J. Wade Davis University of Missouri, Health Management and Informatics; MU Informatics Institute;
  • Lanis Hicks University of Missouri, Health Management and Informatics; MU Informatics Institute;

DOI:

https://doi.org/10.5210/ojphi.v7i2.5664

Abstract

Cancer registry data collection involves, at a minimum, collecting data on demographics, tumor characteristics, and treatment. A common, identified, and standardized set of data elements is needed to share data quickly and efficiently with consumers of this data. This project highlights the fact that, there is a need to develop common data elements; Surveys were developed for central cancer registries (CCRs) and cancer researchers (CRs) at NCI-designated Cancer Centers, in order to understand data needs. Survey questions were developed based on the project focus, an evaluation of the research registries and database responses, and systematic review of the literature. Questions covered the following topics: 1) Research, 2) Data collection, 3) Database/ repository, 4) Use of data, 5) Additional data items, 6) Data requests, 7) New data fields, and 8) Cancer registry data set. A review of the surveys indicates that all cancer registries’ data are used for public health surveillance, and 96% of the registries indicate the data are also used for research. Data are available online in interactive tables from over 50% of CRs and 87% of CCRs. Some other survey responses indicate that CCR treatment data are not complete for example treatment data, however cancer researchers are interested in treatment variables from CCRs. Cancer registries have many data available for review, but need to examine what data are needed and used by different entities. Cancer Registries can further enhance usage through collaborations and partnerships to connect common interests in the data by making registries visible and accessible.

Keywords: Public Health; Disease Registries; Disease Reporting

Author Biographies

Iris Zachary, University of Missouri, Health Management and Informatics; MU Informatics Institute; Missouri Cancer Registry and Research Center

Assistant Research Professor, Health Management and Informatics

Iris Zachary, PhD, MSHI, CTR

Suzanne A Boren, University of Missouri, Health Management and Informatics; MU Informatics Institute

Associate Professor, Health Managemnt and Informatics

Suzanne A. Boren, PhD, MHA

Eduardo Simoes, University of Missouri, Health Management and Informatics; MU Informatics Institute; Missouri Cancer Registry and Research Center

Professor, Health Management and Informatics

Eduardo Simoes MD, MSc, DLSHTM, MPH

Jeannette Jackson-Thompson, University of Missouri, Health Management and Informatics; MU Informatics Institute; Missouri Cancer Registry and Research Center

Jeannette Jackson Thompson PhD, MSPH

Lanis Hicks, University of Missouri, Health Management and Informatics; MU Informatics Institute;

Professor, Health Management and Informatics

Lanis Hicks PhD

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Published

2015-05-31

How to Cite

Zachary, I., Boren, S. A., Simoes, E., Jackson-Thompson, J., Davis, J. W., & Hicks, L. (2015). Information Management in Cancer Registries: Evaluating the Needs for Cancer Data Collection and Cancer Research. Online Journal of Public Health Informatics, 7(2). https://doi.org/10.5210/ojphi.v7i2.5664

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Section

Original Articles