Perspectives from oncology patient navigation programs on information management practices and needs: a descriptive study.

Purpose: The purposes of this study are to describe oncology patient navigation (PN) program perspectives on: (1) use of information systems and processes, (2) uses of program data, and (3) desired information system characteristics.

Methods: We conducted multi-phase data collection to inform development of the Patient Navigation Barriers and Outcomes Tool™ (PN-BOT™), a new information management and reporting tool for oncology PN programs. Phase I was a national online survey of PN staff (n = 343) about data practices. Phase II was a pilot test of a PN-BOT™ prototype with nine PN programs. Survey results were tabulated. Qualitative analysis identified emergent themes from open-response fields from the Phase I survey and open-response survey and interview data from Phase II pilot testers.

Results: PN program information management practices and systems were diverse and often leveraged a patchwork of untailored platforms. Navigators used data to inform navigation tasks, service improvement, research, and reporting. Respondents desired a streamlined, integrated, affordable data system able to minimize data entry burden, meet needs of diverse stakeholders, facilitate navigation work, readily generate reports, and share information among healthcare team members.

Conclusions: Although oncology navigation programs explore diverse solutions, programs struggle to find health information technologies that sufficiently meet their needs. Information systems designed for oncology PN programs should perform a wide range of functions: be customizable, affordable, interoperable, and have low data entry burden. Organizations exploring solutions should invite PN input in decisions. PN-BOT™ was developed as a free Excel-based tool for PN programs responsive to reported needs.