Major cancer center plus two satellite locations in a major healthcare system.
Patient navigators (PNs) at Swedish Cancer Institute (SCI) take a proactive, repeat approach to making patients aware of their services. All SCI patients are offered a consent form that permits PNs to contact them at each point along their cancer care journey, from new diagnosis to survivorship. (PN contact to consent forms are distributed alongside distress screening forms.) This repeat, proactive approach provides multiple opportunities for patients to be contacted by PNs, who can help them understand and utilize supportive care services. PNs’ initiation of contact with patients resulted from the work of a variety of stakeholders to reconcile unsolicited outreach, which is professional norm in many PN programs, with SCI’s interpretation of The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule, which previously prohibited it.
The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule is deliberately open to interpretation regarding who is considered a covered health care provider and, therefore, who may access patients’ protected information. Swedish Cancer Institute’s (SCI) interpretation of HIPAA’s Privacy Rule did not recognize patient navigators as covered entities due to the external source of their funding (for example, from the American Cancer Society). This barrier to PNs conducting patient outreach was deepened by mistrust between SCI staff and a former PN. Consequently, SCI prohibited PNs from initiating contact with patients to offer their services. Rather, referral to PN services required patient self-referral from picking up flyers in the education center or introductions by SCI staff (75% from Social Work). PN staff observed that the asystematic nature of this referral process impeded the optimization of PN services, in terms of both number of patients reached and equitable distribution of patients’ opportunity to receive services.