How One Patient Navigation Program Worked Around HIPPA Impediments to Patient Outreach

Contact Name: 
Shannon Marsh
Name of Institution, Organization or Community Where the Project Was Implemented: 
Swedish Cancer Institute (SCI)
Description of Project Setting: 

Major cancer center plus two satellite locations in a major healthcare system.

Patient Navigation
Barriers to Care Access
Target Population: 
Project Description: 

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.

Problem or Issue the Project Was Designed to Address or Improve: 

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.

Difficulties Encountered in Planning, Implementing, Evaluating or Sustaining the Project: 
The SCI approval process to finalize the consent form took over a year, which slowed implementation. Implementing the consent to contact form varied by clinic. Some clinics had a hard time making the form – and, therefore, referrals to PN – part of their system.
Project Successes: 
SCI’s repeat, proactive approach to PN outreach has facilitated patients’ access to supportive care services available at each point in their cancer care journey. It has effectively mitigated the information overload that can happen in one-time outreach, typically at the beginning of cancer care. Distributing the PN consent to contact form alongside the psychosocial distress screening form that SCI has implemented to meet Commission on Cancer Standard 3.2 has successfully systematized periodic PN outreach opportunities.
Helpful Information Before the Project Started: 
Obtaining approval for the consent to contact form might have been sped up had there been a SCI staff member championing patient navigation earlier.
Project Significance: 
Periodic check-ins with patients offer more opportunities for patients to obtain supportive care services at various stages of their journeys than do one-time check-ins, which usually occur following diagnosis, when a patient is too overwhelmed to be able to synthesize and act upon the information provided.
Lessons Learned for Patients, Caregivers and/or Communities: 
Patient navigation is available to patients at all points along their journey. Because their needs for supportive care services may change over time, it is valuable to reconnect periodically with patient navigators.
Lessons Learned for Clinicians or Health Care Professionals: 
Patient navigators can serve as resources for hospitals, and they can best accomplish this goal by being integrated into patient processes at multiple points. Clinicians, social workers, administrators, and other health care providers can be champions for patient navigation within their health care setting. Champions are most successful when they have strong relationships with other departments and with administration.
Lessons Learned for Researchers or Additional Research Needed: 
Research is needed to describe the temporality of PN in relation to a patient’s journey of cancer care. For example, when in a patient’s trajectory are they most likely to utilize PN services? While there is likely variability in patients’ uses of PN services across time, research may be able to determine the optimal or most crucial times when PN is most needed, wanted, and successful.