Implementation of INHERET, an Online Family History and Cancer Risk Interpretation Program for Primary Care and Specialty Clinics
INHERET, Inc.;
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Department of Internal Medicine, University of Michigan Medical School;
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Office of Technology Transfer, University of Michigan Medical School; and
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INHERET, Inc.;
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INHERET, Inc.;
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Department of Internal Medicine, University of Michigan Medical School;
Department of Epidemiology, School of Public Health, University of Michigan, Ann Arbor, Michigan.
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Background: Individuals at increased risk for cancer are ascertained at low rates of 1% to 12% in primary care (PC). Underserved populations experience disparities of ascertainment, but data are lacking. INHERET is an online personal and family history tool to facilitate the identification of individuals who are eligible, according to guidelines, to be counseled on germline genetic testing and risk management. Patients and Methods: INHERET data entry uses cancer genetics clinic questionnaires and algorithms that process patient data through NCCN Clinical Practice Guidelines in Oncology and best practice guidelines. The tool was tested in silico on simulated and retrospective patients and prospectively in a pilot implementation trial. Patients in cancer genetics and in PC clinics were invited to participate via email or a card. Informed consent was completed online. Results: INHERET aimed to integrate patient data by algorithms based on professional and best practice guidelines to elicit succinct, actionable recommendations that providers can use without affecting clinic workflow or encounter length. INHERET requires a 4th-grade reading level, has simple navigation, and produces data lists and pedigree graphs. Prospective implementation testing revealed understandability of 90% to 100%, ease of use of 85%, and completion rates of 85% to 100%. Physicians using INHERET reported no added time to their encounters when patients were identified for counseling. In a specialty genetics clinic, INHERET’s data were input, on average, within 72 hours compared with 4 to 6 weeks through standard care, and the queue for scheduling patients decreased from 400 to fewer than 15 in <6 months. Conclusions: INHERET was found to be accessible for all education and age levels, except patients aged >70 years, who encountered more technical difficulties. INHERET aided providers in conveying high-risk status to patients and eliciting appropriate referrals, and, in a specialty clinic, it produced improved workflows and shortened queues.
Submitted March 6, 2021; final revision received June 10, 2021; accepted for publication June 10, 2021.
Author contributions: Study design: Schroeder. Questionnaire and/or report design: Milliron, Merajver. Data assembly: McCain. Data analytic support: Schroeder. Program design and/or development: McCain, Arthurs, Schroeder, Keren, Merajver. Reviewed program testing results: McCain. Patient enrollment: Kittendorf, Harper. Patient data entry: Cook. Reviewed outputs: Milliron, Keren, Merajver. Programmer of INHERET tool: Paquette. Tool validation: Merajver. Reviewed guidelines and interpretation for coding: Milliron, Hulswit, Merajver. Guideline coding system creation: Cook. Coded guidelines into INHERET: Cook. Scientific lead: Merajver. Lead, pilot testing of INHERET: Parvaz, Ernst, Zazove. Clinical pilot in Breast and Ovarian Cancer Risk Evaluation Clinic: Milliron, Hulswit. Managed pilot testing for site: Merajver. Managed INHERET development team: Keren. Help desk for patients and providers: Tippie. Problem reporting and resolution: Tippie. Provided anonymized data for reporting: Tippie. Writing: McCain, Milliron, Cook, Kittendorf, Harper, Tippie, Arthurs, Hulswit, Keren, Merajver.
Disclosures: Ms. McCain, Ms. Milliron, Ms. Cook, Mr. Paquette, Mr. Arthurs, Mr. Tippie, Ms. Hulswit, Dr. Schroeder, Dr. Keren, and Dr. Merajver are affiliated with INHERET, Inc. and receive payment for their services and/or are equity holders in the company. The remaining authors have disclosed that they have no financial interests, arrangements, affiliations, or commercial interests with the manufacturers of any products discussed in this article or their competitors.
Funding: Research reported in this publication was partially funded by a grant from the Blue Cross Blue Shield of Michigan Foundation (N024454 UMF; D.F. Keren); a phase I STTR grant from the NIH under award number 1R42CA239842-01 (D.F. Keren); and funds from the Breast Cancer Research Foundation, the Rogel Cancer Center (NIH grant P30CA046592), the Ravitz Foundation, the Michigan Emerging Technologies Fund, and Ann Arbor SPARK.
Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
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