caBIG« and Patients: Navigating Cancer Complexities Together
Robert H. Lurie Comprehensive Cancer Center Pioneers Use of caBIG« to Improve Patient Experience
Diagnosis: the first step of a long journey
According to Dr. Lyle Berkowitz, an internist with Northwestern Memorial Physicians Group, the largest primary care group in Chicago, a diagnosis of cancer marks "an inflection point in healthcare," that triggers a series of complex and potentially confusing actions. Dr. Berkowitz recognized the significant need to provide guidance to patients and their physicians at these points of inflection, and turned to a combination of process and technology built upon the caBIG« Patient Study Calendar (PSC).
"We recognized that PSC could be easily modified to do exactly what we needed," says Warren Kibbe, Director of Bioinformatics the Robert H. Lurie Comprehensive Cancer Center, who led the development effort.
"Most primary care physicians do not deliver a diagnosis of cancer very frequently," explains Dr. Berkowitz. "They may not be current on the protocol for workup or exactly what the patient should do next. Additionally, the patient isn't in a position to ask all the right questions or chart their own course upon receiving their cancer diagnosis."
To provide much-needed formal guidance and support to physicians and patients, Dr. Berkowitz led a research effort under the auspices of the Szollosi Healthcare Innovation Program (SHIP), a nonprofit organization he founded and directs. This project linked well with SHIP's mission to use creative thinking and diverse technologies to produce a better healthcare experience for patients, physicians and others associated with care management and delivery.
"For this project, I was inspired by the research done at Johns Hopkins on line insertion in the ICU that resulted in a simple but highly useful checklist of procedures that essentially eliminated infection," says Dr. Berkowitz. "I wanted to create a similar checklist for primary care physicians upon delivering an important diagnosis such as cancer."
Dr. Berkowitz and his colleagues at the Robert H. Lurie Comprehensive Cancer Center created a five-step checklist to provide physicians and patients with the formal guidance they lacked. But, he also recognized that if the checklist could be translated into a technology tool, it could provide a much simpler workflow for physicians to use, and thus acceptance would be higher. When Kibbe learned more about the functional requirements sought from this tool, he realized that a solid technology foundation was already available in the caBIG« Patient Study Calendar (PSC).
"Although PSC was originally designed to help patients and their care providers follow the protocols in a clinical trial, the process is really very similar for patients being seen at multiple specialty clinics within the medical center. They have different activities on different days that change over time, and compliance with the treatment regime is essential to a positive outcome."
Improved Patient Experience
The modified PSC now in place at Northwestern University leverages existing workflows and resources throughout the organization. Upon delivering a cancer diagnosis, a physician will send a specialized "cancer" message through the existing electronic medical record (EMR) to the NNMPG Care Coordination Team. A Navigator then registers the patient into Cancer Registry for the modified PSC system (called "iNav"), and the system creates an electronic dashboard that notifies them when they need to call the patient, shows them what to tell the patient about their protocol, and provides them with documents they can send to the patient. The result is that this tool helps create a consistent and easy experience for physicians and patients, and does so in a low cost manner, since the well defined protocols do not require specially trained cancer navigators.
This powerful combination of process, technology, and personnel is the pilot for a Northwestern comprehensive Patient Navigator Program, which is currently being used with patients initially seen at Northwestern Memorial Physicians Group. Initial reaction among physicians and patients has been very positive, according to Dr. Berkowitz.
UPDATE: iNav is now freely accessible to the global bioinformatics community under an MIT Open Source license. The full code base may be found online at http://github.com/mgurley/inav. Questions may be directed to Mike Gurley, Sean Whitaker, or Warren Kibbe.
- Additional information about the Robert H. Lurie Comprehensive Cancer Center at Northwestern University can be found at: http://www.cancer.northwestern.edu
- For additional information about PSC and caGrid, please visit https://cabig.nci.nih.gov/tools/PatientStudyCalendar and https://cabig.nci.nih.gov/tools/sharable/cagrid_overview, respectively
- Read about other examples of PSC in action at http://cabig.cancer.gov/resources/newsletter/issueVIII/action.asp and http://cabig.cancer.gov/resources/newsletter/issueXVII/action.asp
- See an oncologist within a few days of initial diagnosis
- Be aware of the support services available by the formal cancer support team on campus (e.g. patient education, social support, financial assistance, etc…)
- Inform other physicians on campus about the new diagnosis (if desired by patient)
- Explain how to coordinate all the materials needed for a second opinion
- Close the loop by having a 1 month post-diagnosis call to ensure all of the above criteria have been met