Spring 2018 NAACCR Narrative Leave a comment


Recinda Sherman, MPH, PhD, CTR
NAACCR Program Manager of Data Use and Research
rsherman@naaccr.org

 

 

Cancer registration is truly a moving target. Implementation of 2018 changes implementation and attempts to stem our ever increasing workload has dominated much of the cancer registry community discussion for the past couple years. Although changes are focused on abstraction of data, the continuous advancements lead to increasing work demands extending beyond data collection.

The primary purpose of central cancer registries is to provide data-driven information for cancer prevention and control and to advise public health planning. This means registry analysts are our frontline for describing and explaining trends and distinguishing them from spurious fluctuations due to data collection changes, as well as developments in clinical diagnosis or treatment. It is not easy to keep up-to-date on of all the issues that impact current and historical trends. And this extends to an analyst’s secondary role, as cancer researchers and technical advisors for shared data.

No one knows the cancer data better than we do, and our expertise is critical to ensure cancer surveillance data is used and interpreted appropriately. In order to remain relevant to outside researchers, we need to provide high quality data in a timely manner. But in order to ensure research integrity, we must also provide our expertise, which, as we know, is warranted but not always solicited. But often we are overloaded by our roles related to the primary purpose of cancer surveillance, while our secondary roles in cancer research and data sharing have to move down our priority list. Many cancer registry analysts are struggling with these competing, and ever increasing, demands.

This often results in long delays for data request fulfillment, which is frustrating for outside researchers. And, potentially more seriously, analyst overload can result in the loss of technical support from the cancer registry. Appropriate and ethical use of cancer registry data hinges on understanding the limitations of our data—including but not limited to the impact of coding changes overtime, which and when new data items meet fitness-for-use criteria, potential for bias with unknown data, using SEER Summary stage versus AJCC, how to use unconsolidated data and the limitations of specific data items in consolidated data, and how data quality initiatives and funding or staffing changes impact the completeness and robustness of our data. It is imperative that we remain timely about our data development and communicate issues fully with outside researchers to ensure the integrity of cancer surveillance research.

So what are we to do? One of the great values of NAACCR is our community network. But much of our analyst collaboration and advising is done through informal networks. As part of my role, NAACCR is moving towards strengthening and formalizing these networks. While work is progressing slower than hoped, we are developing best practice guidelines to help with analyst training and support. We are currently working on updating geocoding guidelines and will move on to other sections of an analyst job, including data dissemination and interpretation.

We also have technical data on our website related to data quality and interpretation focused on CiNA, which we will be augmenting. Regarding data quality, the Data Assessment Work Group, currently chaired by Dr. Mei-Chin Hsieh of the Louisiana Tumor Registry, publishes data quality assessments on commonly used research variables: https://www.naaccr.org/data-quality-assessments-and-evaluations/. And we are currently improving our Researcher Registry Information Database which helps researchers understand fitness for use for specific research by registry: https://www.naaccr.org/research-capabilities-by-registry/. And, in some cases, NAACCR works directly with central registries to fulfill data requests or consult with outside researchers.

But as our field is in constant revolution, this work is under development. If you are interested in documenting your needs or in working to develop the support and standardization tools for analysts, please contact me at rsherman@naaccr.org.

 

 

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