Developing a real-time registry to track breast cancer patients across the city of Boston

Abstract

Objectives: Patient navigation is designed to identify and address patients' needs throughout their cancer treatment. In the context of a clinical trial designed to deliver a standardized patient navigation protocol, a registry was needed to allow users from across multiple health systems to input patient data, track navigation outreach, and coordinate cancer care in real time. To design a registry to allow patient navigators (PNs) at 6 medical centers across 4 health systems to track breast cancer patients determined to be most at risk for delays in treatment.

Materials and methods: A multi-disciplinary team chose REDCap to host the registry. The aim was to develop a platform that would (1) manage a caseload of patients who are most vulnerable for delays; (2) track patients through the continuum of cancer care in real time; (3) allow PNs to prioritize certain patients; (4) facilitate inter-system communication; and (5) allow the research team to monitor navigators' activities (in context of a research study, for supervision and feedback).

Results: The registry was built through collaboration with clinical providers, PNs, informatics specialists, and expert developers from the REDCap team, using the software standard features and incorporating additional functionality using SAS programming.

Conclusion: REDCap provided an accessible and modifiable platform for hosting a registry to track patients in real time. However, it did not streamline PNs' workflows or reduce data entry burdens as intended. A major barrier was the lack of interoperability with pre-existing systems navigators use, which led to redundancy and increased the burden of documentation.

Keywords: REDCap; breast cancer; disparities; registry.

Figure 1.

REDCap Registry—Social Needs Assessment. This screenshot of the Social Needs Assessment tracking form shows 2 things: (1) Patient information piped from other forms within TRIP Registry (blue box at the top) and (2) URL link to go directly to Aunt Bertha from this data entry form (blue box at the bottom).

Figure 2.

REDCap Registry—Clicking on the Aunt Bertha link opens up partner’s website with patient ID info already in referral string.

Figure 3.

REDCap Registry—“To Do” report.

Figure 4.

REDCap Registry—Dashboard.

Figure 5.

REDCap Registry—SQL join showing PN info (piped in from another REDCap project) in form dropdown list.