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Patient Uptake of Genetic Counseling in the eMERGE Network: Initial Experiences Returning Polygenic and Monogenic Results using Microsoft Bookings

Education and Research Strategies
  • Primary Categories:
    • Genetic Counseling
  • Secondary Categories:
    • Genetic Counseling
Introduction:
Pragmatic clinical trials may require virtual visits that cannot be scheduled within an institution's electronic medical record leading to increased administrative burden for researchers. The fourth phase of the Electronic Medical Records and Genomics Network (eMERGE) involved the examination and disclosure of medically actionable genomic results to consenting patients and their healthcare providers. At Massachusetts General Brigham (MGB), genetic counselors conduct high-risk result disclosure. In this study, we investigated the uptake of genetic counseling for high-risk genetic results to evaluate the uptake and efficacy of Microsoft Bookings. Microsoft Bookings is a Microsoft Office HIPAA compliant online scheduling tool that allows for appointment scheduling, integration with the Outlook calendar and automated reminder notifications.

Methods:
Participants were recruited for the eMERGE study if they were between the ages of 3 and 75, if they spoke English or Spanish, and if they had a primary care provider within the MGB system. Recruitment included in-person and virtual methods.  A genetic counselor contacted those at high monogenic, polygenic, or breast cancer integrated risk. Participants were contacted a maximum of 5 times, the first two contacts through an email containing a Microsoft Bookings link and three attempts by phone call. The email alerts were scheduled 5 days apart after which genetic counselors would begin phone call contact attempts. After booking an appointment, the participant was sent a confirmation email for the video conference and the appointment details were automatically imported onto the genetic counselor’s Outlook calendar. Those who were not reached were recorded as “lost to follow up”. The Microsoft Bookings application was employed due to its adherence to HIPAA regulations and integration with researcher’s Outlook calendars. Factors such as demographics, uptake of genetic counseling sessions, and time elapsed between result availability and disclosure were investigated.

Results:
The cohort of 507 high-genetic-risk participants was assessed for appointment uptake and Bookings utilization. High uptake of live disclosure was observed (n= 440; 86.8%). Of those at high risk we had scheduling data available for 424 participants with 370 participants choosing to schedule disclosures. Most scheduled participants independently booked an appointment (n= 264; 71.3%) and for those who did not respond to initial email contacts, study staff scheduled appointments 28.1% of the time (n=104). Participants who scheduled themselves on average took 5.3 days to make a booking and scheduled to meet on average 5.3 days after booking. Participants scheduled by study staff took on average 24.4 days to get booked with appointments being on average 4.7 days after booking. High uptake of independent online booking genetic counselors resulted in 274 total phone calls to high genetic risk participants required with 87 of the 1st phone calls resulted in either scheduling an appointment or opting out of disclosure. After 5 contact attempts, 54 individuals marked as lost to follow up. Fourteen participants scheduled an appointment but failed to attend.

Conclusion:
Approximately 2/3 of the patients in this cohort independently scheduled their appointment through the emailed Bookings link. Self-booking saved study staff time for repeated case preparation, phone calls, and follow-up efforts and the high uptake is presumed to have saved time, resources, and money. Utilization of Microsoft Bookings page to schedule patients additionally found a reduction in time lapsed from initial notification to disclosure leading to fewer delays in care. This option was well suited for this cohort, however, may not be the best option for populations with lower technological literacy or access as it requires internet access and video conferencing platforms. This data supports the utilization of an online booking webpage in conjunction with phone calls to contact patients for disclosure appointments in the context of a research study.

Agenda

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