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Aligning policy and healthcare services with Veterans' values and preferences for results from Whole Genome Sequencing
Sara J. Knight, PhD
VA Salt Lake City Health Care System, Salt Lake City, UT
Salt Lake City, UT
Funding Period: May 2017 - December 2021
Next-generation sequencing (NGS) has enabled rapid and affordable sequencing of an entire genome. Genome-based tests using NGS, such as whole genome sequencing (WGS), have the potential to reveal extensive genomic information that is valuable in assessing a person's health risks, diagnosing conditions that have a genetic basis, targeting pharmacological therapies, and enabling personalized care plans. The Department of Veterans Affairs (VA) has emphasized genomics in its strategic plan and the VA is developing strategies to release the results of genomic analyses to the next 500,000 Veterans enrolled in the Million Veterans Program. Yet, a substantial gap exists between what WGS can deliver in terms of the quantity of genomic information and what results can be interpreted that patients would find meaningful. Little systematic quantitative information is available on how Veterans would assess the value of WGS information or genomic healthcare services. To inform VA policy and clinical practice, there is an urgent need to know Veterans' perspectives on the importance of genomics.
This research project seeks to establish a foundation of knowledge on: (a) how Veterans value the findings from WGS and other NGS-enabled tests; (b) what healthcare services Veterans prefer to help them comprehend the information from these tests and to use the findings in their healthcare; and (c) how VA clinical leaders and policy makers will prioritize and use knowledge of Veterans' values and preferences in the design of genomic health services and clinical precision medicine.
To achieve our aims, we are using a sequential mixed methods design (qualitative-quantitative-qualitative) using structured focus groups and cognitive interviews of Veterans recruited in VA primary care and specialty care clinics (Aim 1); a discrete choice experiment survey in a national population-based sample of Veterans receiving care in the VA (Aim 2); and facilitated deliberative process groups with national VA executives (Aim 3).
No findings are available at this time. Focus group data is currently being transcribed.
The findings will be highly relevant to VA executive decision-making about how to disclose to Veterans the results of WGS and other genome-based tests. Our study will be a crucial first step in providing generalizable quantitative information on Veterans' values for return of genomic results from WGS and the services needed to deliver and interpret the results. Our design provides a test of potential differences in preferences for genomic results across ethnicity/race and age groups, factors would be expected to influence preferences. By examining the estimates and other statistics from our analysis, we can estimate future utilization and demand of WGS. This information is critical to planning policy and genomic services in VA that are consistent with Veterans' values.
External Links for this Project
NIH ReporterGrant Number: I01HX002315-01
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DRA: Health Systems
DRE: Prevention, Genomics, Prognosis, TRL - Applied/Translational
Keywords: Clinical Diagnosis and Screening, Guideline Development and Implementation, Patient Preferences
MeSH Terms: none