» Back to Table of Contents

Research Highlight

Access to the Promise of Precision Medicine: Lessons Learned from the Organization and Delivery of Genetic Services in the Veterans Health Administration

Genetic information can transform healthcare and improve health outcomes through better diagnosis, prognosis, risk assessment, and targeted treatment, screening, and prevention. The demand for genetic services is growing. Yet currently, there are insufficient numbers of genetics professionals to meet the demand. Adding to the access challenge in the Department of Veterans Affairs (VA), most genetics professionals work in academic, metropolitan settings; in contrast, more than one-third of Veterans live in rural areas and referral to non-VA genetic services is not a viable option in many communities. For more than a decade, our health services research team has been investigating the organization and delivery of genomic medicine for VA patients.

Genetic services became widely available within VA in 2010 with the launch of the VA Genomic Medicine Service (GMS), a model program serving about 80 VA facilities nationwide using only telehealth modalities (i.e., video-to-clinic, video-to-home, telephone). Telehealth is a sensible approach for genetic services in VA because telehealth enables the reach of clinical genetics expertise across long distances, and telehealth modalities are medically appropriate for most genetic consultation referral reasons for adults. Still, some patients prefer in-person encounters, possibly due to the novel and complex nature of genetic information. In addition to GMS, at least six traditional genetics programs exist in VA today serving patients at one or multiple VA facilities within a region via in-person or telehealth delivery modalities.

We conducted a cross-sectional study of VA patients referred for genetic consultation from 2010 to 2017 with two years of follow-up to assess care coordination of genetic care delivered by GMS, VA traditional programs, and non-VA care.¹ There were 24,778 patients with genetics referrals, including 12,671 (51 percent) women, 13,193 (53 percent) aged 50 years or older, 15,639 (63 percent) White patients, and 15,438 (62 percent) patients with cancer-related referrals. GMS received 14,580 (59 percent) consultations. Like other studies comparing VA and non-VA care, we found VA genetic care had better care coordination than non-VA care. Timeliness and ability to schedule and complete genetic consultations were significantly better within VA.¹

Comparing GMS with VA traditional programs, we found improved access with GMS.1 However, compared with the traditional programs, the uptake of both cancer screening and risk-reducing procedures within two years following the genetics referral was hindered under GMS. Patients were significantly more likely to have these procedures if they completed their consultations, but only if completed under the traditional programs.¹ With most GMS encounters conducted solely by genetic counselors, this likely constrained the recommendations made and the ability to directly order them given their scope of practice. To better understand the differences observed in cancer screening and prevention uptake, we reviewed medical records and conducted interviews with referring clinicians. We learned personalized recommendations (e.g., begin colonoscopy at age 30, then every 1-2 years) were more typical of records from traditional programs compared with GMS. Moreover, more personalized, specific recommendations better met the expectations of referring providers.

We also found that while GMS increased access to genetic services, the telehealth model exacerbated healthcare disparities based on race or ethnicity compared with the traditional programs.¹ The disparities are likely multidimensional and may be explained by the centralized structure and uniform approach of the GMS telehealth model. Centralized services may improve efficiencies of operational and administrative processes, but also can challenge care coordination by constraining the ability to tailor services to local needs, stifling initiative and innovation, and complicating communication processes between the staff, patients, and referring clinicians. Further, vulnerable subpopulations are less able to benefit from a centralized approach because of inconsistencies between the social and cultural assumptions of those implementing the approach and the targeted groups.

In VA, telehealth use is known to be lower in Asian, Black, and Hispanic patients compared with White patients. We observed this happening at the consultation referral stage for patients of Asian, American Indian/Alaskan Native, and Native Hawaiian/Pacific Islander ancestry who were significantly less likely than White patients to be referred to GMS compared with the VA traditional model programs, and at the consultation completion stage for Black patients who were significantly less likely than White patients to complete consultations, but only if referred to GMS.¹ The digital divide cannot explain the disparities we observed in completing genetic consultations, since video-to-clinic encounters were used rather than video-to-home during the study period. Thus, improving access to telehealth equipment and the Internet will not suffice to ensure health care equity.

Mainstreaming genetic services within the practice of frontline clinicians is an alternative approach to improving access to genetic testing. To understand the readiness of frontline VA clinicians to use genetic tests, we administered a web-based survey from August-September 2020 to clinicians (physicians, nurse practitioners, physician assistants, and pharmacists) with VA email who were working at 20 VA facilities with precision oncology programs (10 Prostate Cancer Foundation Centers of Excellence, 10 conducting precision oncology clinical trials) to guarantee experience with genetics among some clinicians.² The survey response rate was 11 percent and 909 were eligible.

We found 21 percent felt prepared to use genetic tests and only 13 percent had ordered genetic tests in the past year, and most had ordered only one or two tests. Other surveys of non-VA clinicians show 30-50 percent ordered a genetic test in the past year. We would expect most VA clinicians to have large numbers of patients in their practice with indications for genetic testing, such as pharmacogenetic testing, tumor testing, or testing for hereditary cancer syndromes. Common reasons for not ordering genetic tests among VA survey respondents included not believing genetics is relevant to their practice or uncertainty about the relevance, not knowing how to order the testing, or preferring to refer patients to genetics or other specialists, revealing their lack of awareness and preparedness to use genetic tests.²

Most VA survey respondents indicated that they would prefer to refer all or some of their patients to genetics or have a genetics provider embedded in their clinic to facilitate genetic testing.² Clinicians felt prepared to use genetic tests themselves if they had genetics education in the past year, experience with ordering genetic tests, or were knowledgeable about genetic testing guidelines.² Even among the more prepared clinicians – the cancer specialists – most did not order any genetic tests, and those who did lacked full confidence in their abilities to carry out pre- and post-test activities.

Somewhat paradoxically, as frontline clinicians ordered genetic tests, they were more likely to have referred patients for genetic consultation in the past year.² This might be due to more post-test genetic consult requests to help interpret and communicate positive, unexpected, or uncertain genetic test results. Additionally, as frontline clinicians take on genetic test ordering, they may be learning what they don’t know about genetic testing. With increasing recognition of their limitations, they may be learning to value the expertise and input of genetics professionals. When asked who should be responsible for updating VA clinicians about genetics, the clinical genetics team or service received the highest rating (57 percent of survey respondents) compared with other options, such as educational programs provided by local VA facilities or VA National Program Offices, academic affiliates, or professional societies.² Thus, genetics professionals are key to the integration of genetics into the practice of frontline clinicians; they are needed to receive genetics referrals and to educate their colleagues.

In VA, as in other healthcare settings, access to genomic medicine has become increasingly relevant to nearly all aspects of clinical care. Adoption and implementation of genetic testing will require a multilevel effort that includes education of clinicians and administrators, opportunities for observing the benefits of genetic medicine, strategies for reducing the complexity of genomic medicine, expanded strategies for accessing genetics expertise, and streamlined usage and resources dedicated to assessing the value of genetic information.³ With increasing use of genetic tests by frontline clinicians, our findings suggest the demand for genetics professionals will remain high rather than decrease. Thus, planning to expand the genetics professional workforce is necessary. Given the limited number of genetics professionals in the United States and their concentration in academic, metropolitan settings, organizing the genetics workforce is challenging, particularly for healthcare systems like VA that cover large geographic areas. In VA, perhaps centralizing administrative and business functions and de-centralizing clinical genetic services through a consortium structure might be best, with regional traditional genetics hubs having both remote and on-site genetics professionals providing virtual care and face-to-face care when needed or desired. This model could improve access to genetic services while ensuring delivery of more patient-centered, effective, and equitable care.

References

1. Scheuner MT, et al. “Demographic Differences Among US Department of Veterans Affairs Patients Referred for Ge-netic Consultation to a Centralized VA Telehealth Program, VA Medical Centers, or the Community,” JAMA Network Open April 1, 2022;5(4):e226687.
2. Scheuner MT, et al. “Genetics Professionals are Key to the Integration of Genetic Testing within the Practice of Frontline Clinicians,” Genetics in Medicine January 2023;25(1):103-114.
3. Hamilton AB, et al. “Factors Influencing Organizational Adoption and Implementation of Clinical Genetic Services,” Genetics in Medicine March 2014;16(3):238-245.