Starting out

The AHEAD program began in 2015 in Dr. Candace Westgate’s OB-GYN clinic at Adventist Health St. Helena. She developed this program in an effort to ensure that all patients would have equitable access to genetic risk assessment and genetic testing, which the ACOG recommends but is often unable to be implemented in practice. When the program began, genetic risk assessment was conducted manually. Patients were asked to complete a paper questionnaire about their personal and family medical history while waiting in the provider’s office for their appointment to begin. The OB-GYN would then use the patient’s responses to inform his or her recommendations—specifically, whether to recommend genetic testing to the patient. For example, if the patient’s responses reflected a family history of certain cancers, the OB-GYN might conclude that this patient could have a genetic predisposition for a hereditary form of cancer. The OB-GYN would then provide the patient with genetic counseling and, with permission, perform genetic testing. The results of that testing would inform the patient’s care plan moving forward. Adventist Health found that this program improved patient access to personalized preventive cancer care by encouraging high–risk patients to undergo cancer risk assessment that could, if indicated by results, lead to genetic counseling and testing.

Going digital

After seeing these initial results, Adventist Health decided to partner with CancerIQ to streamline the risk assessment process for patients and providers. The CancerIQ platform allows patients to complete the personal and family medical history questionnaire electronically and then automatically analyzes their responses using risk models and national recommendations that are programmed into the CancerIQ system. The introduction of CancerIQ allowed genetic risk assessment to be incorporated into the clinic workflow seamlessly and easily: patients can fill out their assessment on an electronic tablet while waiting in the office for their appointment. The assessment is designed to be simple. The patient enters personal demographic information (gender, race, age, etc.), medical history, screening history, and lifestyle information. Then the patient builds their family cancer pedigree with the help of the CancerIQ platform. The platform walks the patient through each member of their family and presents a list of diagnoses to choose from. Using those responses, the platform constructs a family tree. CancerIQ also creates outgoing content that consists of real-time recommendations and eligibility information for a specific patient’s genetic testing, MRI, or other cancer screenings (such as mammogram, lung cancer screening, etc.) based on consistently updated NCCN and USPSTF screening guidelines. Moving to a digital genetic risk assessment tool allowed the OB-GYN clinic to engage nearly nine times as many patients in preventive care management than it previously had.

Expanding the program

Given the success of the AHEAD program in Dr. Westgate’s OB-GYN clinic, it soon expanded to a variety of other specialties (breast surgery, breast imaging, general surgery, GI, urology, oncology) and primary care. However, a major concern for expansion was ensuring that clinicians were able to easily manage genetic data and incorporate its collection, interpretation, and resulting recommendations into their existing workflows. To address this, CancerIQ worked with Adventist Health (and their EHR provider, Cerner) to create a SMART on the FHIR app that would be compatible with Adventist Health’s EHR. The app gives clinicians the relevant CancerIQ data and recommendations they need to make an educated decision about the patient’s risks and best next steps, conveniently within the patient’s medical record. Prior to the launch of the AHEAD program in a new clinic, providers also participate in supplementary education sessions about hereditary cancers and cancer risk, for which they receive CME credits. Although the AHEAD program was already expanding to other Adventist Health specialty and primary care clinics, the introduction of the new CancerIQ Cerner FHIR application accelerated its progress. There are currently 49 clinics within the health system participating in the AHEAD program, allowing thousands of patients to access point of care genetic screening. Of the participating clinics, 60% are primary care and OB-GYN, 16% are breast imaging centers, and the remaining 24% are a variety of specialty clinics.

Providing on-site genetic education and testing

Patients are recommended for genetic testing based on the results of their CancerIQ risk assessment after they receive genetic counseling and provide informed consent. In general, patients are much less likely to follow through on recommended screenings if it requires a different date, appointment, location, or doctor. Therefore, sites that participate in AHEAD are equipped to provide point of care genetic education, counseling, and testing on-site as soon as the provider reads the screening results and recommends it to the patient. Each clinic has a clinical and administrative “champion” (e.g., a provider and a medical assistant) who lead the AHEAD program within the clinic. The team at the clinic is then responsible for daily tasks associated with screening, evaluation, and testing – including follow-up.

Managing patient tests and results

The clinic provides a genetic test, typically requiring a saliva or blood sample, to the patient. The patient is scheduled for a follow-up appointment for about 4 weeks later. Meanwhile, the clinic sends the sample to Adventist Health’s genetic partner, Myriad Genetics, where it is analyzed. The results of the genetic test are sent back to Adventist Health in two to three weeks typically. Test results are interpreted by the ordering provider with assistance from Adventist Health’s regional genetic specialist, who is a physician or nurse practitioner trained at City of Hope to provide genetic evaluation and counseling. The ordering provider then shares the results with the patient and refers all gene-positive patients to the regional genetic specialist for further counseling and continued case management, including a personalized cancer risk management and prevention plan for the patient.

Increasing access during Covid-19

During Covid-19, the AHEAD program had to rethink its delivery model since the initial structure was largely based on in-person clinical appointments. Instead of asking patients to take the risk assessment in the waiting room, clinics now send patients the questionnaire and ask them to fill it out before their appointment.

If the genetic risk assessment indicates that the patient is at high risk for cancer and the patient is unable to come into the clinic to provide a sample for genetic testing, the provider can have a test kit mailed directly to the patient’s home. The patient would then send the sample directly to Adventist Health’s lab partner, Myriad Genetics.

The genetic specialist will then host a virtual visit with the patient to discuss their results and care journey. At this point in the process, patients learn their risks and move on to the next steps in the health system without even leaving their homes. This virtual program is beneficial for patients who would otherwise struggle to reach a provider’s office and has led to increased access throughout Adventist Health’s communities.

Creating coordinated care pathways

By making genetic education and testing available through a patient’s primary care site and automatically looping them into specialty care management (see Figure 1), the AHEAD program makes it easier for patients to learn about their risks and follow through on their recommendations. Patients who demonstrate a higher risk for developing hereditary forms of cancer discuss next steps with their provider or genetic counselor, such as increased screening or referral to a specialist for more advanced care. High-risk patients are then referred to the AHEAD program’s coordinated care system.

The coordinated care system includes specialty care such as imaging, medical oncology, and surgery. By developing this infrastructure of coordinated care to move high-risk patients through the care process, the AHEAD program ensures that patients receive all the benefits of genetic testing.

Keeping patients involved

Meanwhile, CancerIQ supports Adventist Health’s coordinated care. It continuously tracks patients and their results through its dashboard care manager and sends auto-generated reminders for patients who are at risk of falling off the care pathway (i.e., not following up with recommended screenings and treatment). This is true for all patients who have a care plan designed and logged in CancerIQ; it is not exclusive to those who qualify as high risk for hereditary cancer.