One of my favorite quotes that pertains to cancer data collection is, “Hiding within the mounds of data is knowledge that could change the life of a patient or change the world.” The cancer registry is the one location within the health system that contains the complete “story” of each patient’s cancer diagnosis and journey. With all of this data combined within a single database, the cancer registry becomes the equivalent of “one stop shopping” for clinicians, researchers and administrators.
Cancer registrars know the data well. But those requesting data from the registry may not be as well versed. This can lead to frustration from both the requestor and the registrar. Engaging with those within your organization that frequently request data to educate and inform can benefit both parties.
Most healthcare professionals outside of the cancer registrar are unaware of the vastness and extreme detail of the data. Providing them with a list or table of the core data set and possible supplemental data sets collected should be the first step. A presentation or demonstration of the registry abstract is a good second step. This provides them a look at the data set and the layers of data collected. A visual of what is available to them will be beneficial for secondary data requests.
Creating a data request form to guide the requestor can also be very helpful. For example, do they want all cases or only analytic cases? Do they want all years or a data range, first course treatment only or all treatment? Create an area in the form where the requestor can provide a scope of the data request. This gives the registrar an understanding of how the data will be used, as well as an opportunity to provide some additional insight and guidance with the data request.
It is important for the cancer registry to promote the data we collect and the many uses within the cancer program and health system. Providing education and insight into the data will promote cancer center partnerships and increase awareness.
Click on the links below for related articles and a sample cancer registry data request form.
Sample Cancer Registry Data Request Form
Saving Lives with Patient Data Registries