Most cancer centers are still not making full use of the value hidden within their cancer registry data. From better patient care to more robust research initiatives, registry data has the power to fuel a wide range of activities within your organization – and our recent webinar explored how you can make that happen.
The event featured Jennie Jones, Cancer Registry Director at Moffit Cancer Center, who summed up the case for registries very clearly: “Without high-quality data, you really don’t have a strong foundation,” she said.
This blog offers a few highlights from the discussion, revealing how Jennie believes registries can improve their data quality and generate more value across the entire cancer center.
The first three takeaways from our webinar are actionable tactics to improve registry data quality and availability:
Quality assurance (QA) is a foundational aspect of data management within cancer registries, but it requires a level of consistency that can be hard to ensure across busy teams. Jennie suggests that registries develop standard operating procedures (SOPs) to assess, maintain, and improve data quality.
There are several facets to this, including:
Cancer data is far more likely to be used if it is quick and easy to access, but many registries struggle to share data and reduce guesswork. Jennie explained that Moffit is currently trialing a comprehensive system that enables users to access real-time data whenever they need it – and unlock far more value from the registry.
However, she also revealed simple steps to increase data availability. For example, using synoptic formatting ensures both the element and response are readily available in pathology and operative reports, enabling providers to immediately find and use the data they need.
Many organizations underutilize registry data because personnel simply don’t think to request support from their registrars. Jennie argues that this can be solved with better stakeholder communication, encouraging registrars to engage with personnel to explain how data can help them; she even suggests creating reference sheets to remind stakeholders that registry data is available during their daily workflow.
Our next three takeaways explore exactly what some of those underappreciated use cases are:
Accurate registry data can be powerfully augmented with other kinds of data, such as Social Determinants of Health (SDH) or migration patterns. This will enable registrars to find novel patterns within their data and glean new insights, such as a clearer view of trial recruitment diversity and equity.
Registrars can use registry data to assess relative survival rates and ensure their organization’s follow-up rates are up to date. Jennie explains how Moffit's organization has a linkage with the National Death Index to support this use case, and it allows them to maintain follow-up rates above 99%, which is exceptional given the size of their database.
Cancer patients with unusual co-morbidities can present providers with a major problem, as standard care paths may be dangerous or ineffective. Accessing historical data from the registry can help solve this problem, allowing providers to identify a care path that has worked before and assess its relative suitability or plausibility in the current instance.
This article reveals just a handful of the insights Jennie Jones and event moderator Amanda McKee offered during our webinar. During the full event, she explained a range of further use cases, as well as offered concrete tips to use automation and technology to save time, reduce backlogs, and improve patient care and retention.
Curious how these insights could help your registry thrive?