Implementing and Evaluating Genomic Screening Programs in Health Care Systems Proceedings of a Workshop (2018) / Chapter Skim
Currently Skimming:
5 Understanding Participant Needs and Preferences and Improving Diversity and Equity
5 Understanding Participant Needs and Preferences and Improving Diversity and Equity
Pages 71-86
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 71... ...
• Look to other disciplines to learn from their successes in creat ing a more diverse research workforce and research programs that engage diverse populations. (Horowitz)
|
From page 72... ...
She described a series of studies designed to better understand patient preferences related to genomic testing, including a study examining preferences for Lynch syndrome screening in the general population and studies about integrating genomic screening in the Department of Veterans Affairs (VA)
|
From page 73... ...
Preventive Services Task Force guidelines recommend routine screening starting at age 50. In response to the "best" test scenario, in which the test results would be shared with the primary care provider and there was a zero percent chance of false negative results, the researchers found that 97 percent of those surveyed would opt for using genetic testing.
|
From page 74... ...
She shared unpublished data that indicated a marked increase in use of IHC and MSI testing in the VA beginning in 2010 as the systematic implementation of molecular analysis of tumor tissue was initiated, and she said that another cohort that captures the full implementation effort is now being assessed. In a study of barriers to and facilitators of genomic health services in the VA, Knight and colleagues interviewed VA clinicians and administrators about their experiences referring veterans diagnosed with colorectal cancer for genetic counseling, molecular analysis of tumor tissue, and genetic testing.
|
From page 75... ...
Each of these methods alone is limited in its ability to provide a generalizable picture of the types of genomic health care services that would be valued in diverse populations. To address these challenges, Knight and her colleagues are using a mixed methods design beginning with interviews and focus groups of 120 veterans from four geographic regions of the United States (Northeast, Southeast, South Central, and Western)
|
From page 76... ...
Her studies are now using a highly nuanced, multi-level, multi-process stakeholder engagement process that involves in-depth key informant interviews and representative surveys to inform ethical considerations, research methods, and translational activities; advisory boards of patients, family members, clinicians, health system leaders, and community leaders; and democratic deliberative process groups to engage the public, policy makers, and clinicians in the development of sensible genomic health care policies and genomic medicine programs that can be implemented in diverse communities and health care systems. ENGAGING DIVERSE POPULATIONS IN GENOMICS-BASED RESEARCH Horowitz began by sharing some perspectives from her diverse partners on a genomics stakeholder board (Kaplan et al., 2017)
|
From page 77... ...
. One out of seven people of African ancestry carries a genetic variant of APOL1 that increases the odds of kidney failure approximately tenfold if the individual has hypertension, Horowitz said (Genovese et al., 2010; Horowitz et al., 2017)
|
From page 78... ...
The process began with formative research, introducing GUARDD at five federally qualified health centers, six neighborhood practices, and four academic primary care practices throughout New York City. At each site, the proposal was presented to the providers for their feedback.
|
From page 79... ...
Most providers indicated that race and ancestry were good clues as to who should undergo genetic testing and that genes may play a role in existing health disparities. A baseline survey of the beliefs and concerns of the 2,000 study participants revealed that few had ever had a previous genetic test or understood genetic testing.
|
From page 80... ...
Kho described a similar analysis performed by his group using recent data to estimate how many people actually have their data captured in an electronic health record (EHR) in a given month.
|
From page 81... ...
In this emerging model, when academia fails to sufficiently engage with the community, the community takes the initiative and engages researchers on its own terms. A group of community advocates and faith-based partners, including leaders from local churches, researchers from academic medical centers, and community health partners, came together to identify research priorities based on community interest.
|
From page 82... ...
Kho noted that this was confirmed by looking at the co-localized distribution of the participating churches and the distribution of cases of hypertension and diabetes in Chicago. When the ambassadors were asked what they would like to learn more about from researchers, the top-ranked responses were cancer, high blood pressure, diabetes, mental health disorders, heart disease, and stroke.
|
From page 83... ...
In this case, there happened to be a close correlation between people who self-reported African ancestry and those who had genetic African ancestry, but determining genetic ancestry was not part of the study. Horowitz noted that the researchers spent considerable time consulting with a diverse group of experts and stakeholders to determine how best to ask community members about their African ancestry.
|
From page 84... ...
For example, genomic screening studies or cascade testing of current or former members of the military could affect their careers or retention of benefits. Knight responded that veterans, military service members, and members of the federal government are not covered by the Genetic Information Nondiscrimination Act of 2008 (GINA)
|
From page 85... ...
Low-prevalence diseases include both rare diseases and diseases that are very specific to certain populations. The participant asked whether there are efforts to ensure that particular genetic screening tests are accessible to those groups that might be affected more than others and also asked about efforts to include data on rare diseases in databases.
|
From page 86... ...
Bonham added that the All of Us initiative is being very thoughtful about how it defines diversity and is considering factors beyond those of economics, race, and ethnicity. Building trust with diverse groups to encourage participation in genomics is important, and having trusted brokers to facilitate communication and engagement with underserved or diverse populations would be helpful, said a workshop participant.
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.