An Internal Performance Assessment of CancerGene Connect: An Electronic Tool to Streamline, Measure and Improve the Genetic Counseling Process

Abstract

CancerGene Connect (CGC) is a web-based program that combines the collection of family and medical history, cancer risk assessment, psychosocial assessment, report templates, a result tracking system, and a patient follow up system. The performance of CGC was assessed in several ways: pre-appointment completion data analyzed for demographic and health variables; a time study to assess overall time per case and to compare the data entry by the genetic counselor compared to the patient, and a measured quality assessment of the program via observation and interview of patients. Prior to their appointment, 52.3% of 2,414 patients completed the online patient questionnaire section of CGC. There were significant differences in completion rates among racial and ethnic groups. County hospital patients were less likely to complete the questionnaire than insured patients (p<0.0001); and likewise uninsured patients and patients with Medicare/Medicaid were less likely to complete the questionnaire than private patients (p<0.0001). The average genetic counseling time per case was 82 minutes, with no significant differences whether the counselor or the patient completed CGC. CGC reduces genetic counselor time by approximately 14%-46% compared to average time per case using traditional risk assessment and documentation methods previously reported. All surveyed users felt the questionnaire was easy to understand. CGC is an effective tool that streamlines workflow, and provides a standardized data collection tool that can be used to evaluate and improve the genetic counseling process.

Clinical and Counseling Experiences of Early Adopters of Whole Exome Sequencing

“…Overall, approximately 2-3 h of counseling time was provided to each patient. While this appears to be comparable to previously reported counseling times (McPherson et al 2008;Pritzlaff et al 2014;Sobol et al 1999;Wham et al 2010), the content of the counseling sessions are likely to be distinct (e.g., unlikely that a family history/pedigree would be obtained in a WES counseling session) barring any meaningful comparison. The shorter counseling times may be cause for concern if key information is not discussed.…”

Understanding the contribution of family history to colorectal cancer risk and its clinical implications: A state‐of‐the‐science review

“…These tools generally allow patient self‐entry of the FH, and many provide clinical decision support directly to clinicians. Several have undergone a formal scientific assessment . Included in the online supporting information is an inventory of 15 tools that can be used for cancer FH collection/risk assessment as well as their attributes; it was developed in conjunction with the Global Alliance for Genomics and Health.…”

“…Several have undergone a formal scientific assessment. [99][100][101][102][103] Included in the online supporting information is an inventory of 15 tools that can be used for cancer FH collection/risk assessment as well as their attributes; it was developed in conjunction with the Global Alliance for Genomics and Health.…”

Optimizing efficiency and skill utilization: Analysis of genetic counselors' attitudes regarding delegation in a clinical setting

“…Online educational tools and videos can also be used to not only engage patients prior to undergoing genetic counseling, but may also be used as decision-making aids (Doerr et al, 2014;Sanderson et al, 2016;Yee et al, 2014). Tools such as these can help reduce average GC time per case (particularly in collection of family and medical history), improve consistency of care, aid in identifying appropriate referrals, as well as improve patient understanding (Cohen & McIlvried, 2011;Doerr et al, 2014;Pritzlaff et al, 2014).…”

“…The genetic counseling profession has adopted multifaceted strategies to address this shortage including (a) expansion of the number and size of Accreditation Council for Genetic Counseling (ACGC) accredited Genetic Counseling Programs, (b) the adoption of alternative service delivery models such as telephone genetic counseling, telemedicine, and group counseling (Cohen et al, ; Kinney et al, ; Platten et al, ), (c) the development of genetic counseling assistant positions (Pirzadeh‐Miller, Robinson, Read, & Ross, ), and (d) collaborations with non‐genetics professionals to provide genetic services for routine indications (Cohen & McIlvried, ; O'Shea et al, ). Per the 2018 National Society of Genetic Counselors (NSGC) Professional Status Survey, 62% of GCs are utilizing multiple service delivery models (National Society of Genetic Counselors, ) and genetics clinics are implementing online tools that improve efficiency by allowing patients to share their own medical information prior to a clinical appointment (Pritzlaff et al, ).…”