Building a cancer genetics and prevention program
Finally, the increasing number of commercial laboratories offering genetic testing has resulted in more competition and lower prices, in some cases to a point that direct-to-consumer charges may be even lower than insurance copayments. This is contributing to a rapid increase in individuals being tested including patients who otherwise would unlikely have been tested in the past because of lack of fulfillment of insurance criteria. The challenge for us is to be ready to help navigate the increasing amount of information obtained as a result of all these changes.
Integration of electronic platforms
In an era of full implementation of EMRs, a cancer genetics program should not simply adapt to the new environment but fully embrace it and explore the possibilities that come with it. Thus, from its inception, the SCGPP has been embracing the electronic platforms to the maximum extent so the clinical operation is streamlined and documentation is well-displayed and accessible in the EMR. The Yale health care system uses EPIC (Epic Systems, Verona, WI) as its EMR, and the SCGPP uses Progeny (Progeny Genetics LLC, Delray Beach, FL) to collect data, construct family pedigrees, and build the research registry of the Program. A joint effort by the developers of both systems has resulted in integration at different levels. Thus, after a referral is received, patients are called, registered, and asked several questions including their own cancer and polyp history as well as their family history of cancer. This assists in triaging patients to the most appropriate SCGPP provider: a genetic counselor, a disease physician leader, or a combined visit according to the established internal protocol. In all cases, for new patients with GI cancer syndromes, a combined appointment of a genetic counselor and the GI physician leader is scheduled. At the same time, patients are sent an email with a link to the Progeny online questionnaire that includes personal and family history of cancer as well as extensive clinical information. Once the questionnaire is completed, the program generates a preliminary pedigree that patients can print, and the SCGPP gets a message communicating that the patient has completed this questionnaire. Therefore, when patients are seen on consultation, providers already have the provisional data and pedigree. During the visit, information is verified and edited as needed, and the finalized pedigree goes live through a hyperlink in the EMR. Every revision results in an updated pedigree visible through the mentioned hyperlink. This process saves a considerable amount of time to the providers and increases clinic efficiency.
Informed consent for the research registry is also fully electronic, with signatures recorded in tablets that transmit the signed document to a secure server.
The necessary team approach
Another essential component of a cancer genetics program like this is the integrated and comprehensive approach to patients. Thus, in our Program, the combined appointments for GI patients with the genetic counselor and the physician leader cover all different aspects of care, and a complete plan is suggested and discussed. Once the initial assessment is finalized and genetic testing results (if ordered) are completed, patients are followed prospectively to ensure that prophylactic and cancer prevention measures are undertaken according to the updated standards of care. Complex cases are discussed with the entire team in the weekly case conference that is always followed by a scientific conference with alternating topics such as journal club, practice improvement, ongoing research projects, and extensive case reviews.
Network integration
Although the needs for cancer genetics can be found in any corner of the map, it is not realistic to believe that services like this can be provided in a consistent fashion without being part of a bigger program umbrella. In our case, Yale’s Smilow Cancer Center charged the SCGPP with the duty to provide high quality and consistent cancer genetics services to the entire network that currently includes a total of 5 affiliated hospitals and 10 care centers. To do so, all cases seen outside the main campus are brought up for discussion in the weekly case conference. Furthermore, counselors distributed throughout the network routinely also see patients in the main office, and when away, they participate in case conference and scientific conference via teleconference or videoconference. All this is considered critical to facilitate a cohesive and state-of-the-art program that extends beyond the main campus. Recently, telemedicine is used to provide consultations directly to patients so the program’s services are brought to the most remote locations. A senior genetic counselor is in charge of the network operations to facilitate all these services and help engage providers in the corresponding facilities. She regularly attends tumor board meetings in the local hospitals to help disseminate knowledge in cancer genetics as well as to assist in the identification of patients who can benefit from referral to the SCGPP.
