And the Search Continues …

Once patients have their first consult to determine a treatment plan for their cancer, the data become more complex and widespread. Let’s look at a typical breast cancer case: The patient’s pathology report is likely in the hospital’s EHR. That information accompanies her when she meets with a surgeon to talk about her diagnosis, possible breast conservation, the need for adjuvant medical oncology, and next-step oncology such as chemotherapy and radiation, and the surgeon is likely to be using a practice-based EMR. 

The patient may go to the hospital for some imaging to determine extent of disease, where more information is entered into the hospital EHR, and maybe to an outside laboratory for genetic testing, which has its own systems. Next, she will visit other oncology clinicians for an initial consult where data are captured in a practice-based EHR or an oncology information system. 

Treatment plans are often designed in separate oncology information systems — one for medical oncology and one for radiation oncology. That’s at least 5 records systems navigators must check to keep up with their patients’ cases. Furthermore, none of the systems include structured or dedicated fields for documenting the essential information navigators collect: how does the patient feel about her diagnosis; is she experiencing depression or anxiety; and does she need help with transportation, childcare, or paying her co-payments.

The Lucky Ones and Their Systems

Ideally, navigation and care coordination systems are centered on patients and contain information from all the stakeholders involved in the patient’s care: the hospital, the private practices, joint-ventured cancer centers, county-employed social workers, and so on. No one “owns” the record or has one that trumps all others. Instead, patient data are at the core with all oncology case information in one place and managed by the navigator, who is best positioned to see the big picture. 

Hospital EHRs are not designed to support multidisciplinary oncology care coordination or navigation. With physicians, hospital employees, and business associates as primary users, the sole purpose of hospital EHRs is to warehouse information about billable events inside the facilities and maintain corresponding electronic records in lieu of paper. Patient navigation and care coordination systems should be designed to extend beyond the walls of a single facility, incorporate nonclinical events, and be truly patient-centric.

All oncology care clinicians must willingly share patient data on a system or platform that supports the navigators and care coordinators in the interest of achieving the best possible patient outcomes. When data is held hostage — willingly or not —the patient suffers.

Legislative planners had this scenario in mind when care coordination was exempted from the Health Insurance Portability and Accountability Act of 1996 [§ 164.506(c)(2)]. Care coordination platforms or systems must have appropriate business associate agreements in place with all of those accessing and providing information for the patient. Each of the covered entities may disclose the relevant PHI for care planning purposes, as long as there is HIPAA Security Rule compliance. Data are easily filtered to include only relevant information for care coordination — nothing more and nothing less.

Better Technology Supports the Commitment to Navigation

One more thing that has not changed since the 1990s: the passion and commitment of navigators and care coordinators to serve patients. That’s a good thing, of course. Ask any patient about the knowledge of their navigator, they will tell you that navigators save lives, greatly reduce suffering, and help physicians provide the best possible care.

But, in my decades-long experience in the navigation community, it’s become clear that better systems would help them to work more effectively and productively to achieve better outcomes — both for their patients and their employers.


Cam McClellan Teems 
is a long-time oncology care coordination consultant and certified navigator.