Applying an Implementation Science Approach to Genomic Medicine Workshop Summary (2016) / Chapter Skim
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3 Engaging Large and Diverse Populations for Analysis
3 Engaging Large and Diverse Populations for Analysis
Pages 19-30
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From page 19... ...
One potential source of data for genomic medicine implementation research is cohorts that have been assembled for discovery purposes.1 This chapter examines a genomics biobank operated by a large regional 1 For more information and background reading on large genetic cohort studies, see Appendix F
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The Geisinger patient population does not have much racial or ethnic diversity, Faucett said, but it does have a great deal of socioeconomic diversity. Central Pennsylvania has one of the highest poverty rates in the United States, and access issues often arise because many people live in rural communities.
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Moving forward, the system is considering bringing on more genetic counselors, reaching out to large families at reunions, and using online venues to "get the word out in a large volume without having to see each person individually." Return of Results Geisinger also convened an additional six focus groups in 2012 prior to implementing procedures regarding the return of research results. One major outcome from the 2012 focus groups was the realization that par 2 For more information on MyCode, a biobank program within the Geisinger Health System, see http://www.geisinger.org/for-researchers/partnering-with-patients/pages/mycodehealth-initiative.html (accessed February 22, 2016)
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location," he remarked, reiterating one of the goals of implementation science which is to adapt and refine practice change strategies based on the characteristics of a particular setting. Participants in the 2012 focus groups also requested educational materials on genomics for clinicians and for patients.
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. Now our philosophy is that returning results should be the standard practice." Progress has been gradual but steady, Faucett said, and they are becoming more comfortable with the precision medicine movement.
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To remedy this deficiency, Génome Québec was launched in 2000 and is one of six regional genomics centers that are part of a national program called Genome Canada. The mission of Genome Canada is to develop and apply genomics-based technologies that provide social and economic benefits for the Canadian population.
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"We're starting with the clinical problem and working back." The chief executive officers of health care systems would really benefit from hearing this dialogue, observed Geoffrey Ginsburg, the roundtable's co-director and the director at the Duke Center for Applied Genomics & Precision Medicine. Ginsburg went on to stress the importance of engaging experts in implementation science together with 3 For more information on the mission and activities of Génome Québec, see http://www.genomequebec.com/en/who-we-are.html (accessed February 23, 2016)
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These communities, LePage said, "are up in the north; they're isolated; they have substandard care; plus they're in a different health care system." An Institute of Aboriginal Studies exists in Canada and is working through some of the issues related to those populations, he added. INCLUSION OF RACIAL AND ETHNIC MINORITIES The inclusion of racial and ethnic minorities in research requires specialized expertise and extra effort, yet most researchers know very little about effectively engaging stakeholders in the research process, said Consuelo Wilkins, executive director of the Meharry-Vanderbilt Alliance and an associate professor of medicine at the Vanderbilt University Medical Center.
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Communication involves not just recruiting members of a specific population to participate in a study but also helping them to understand and act on genetic test results, Wilkins said. According to an unpublished Vanderbilt survey cited by Wilkins, genomic literacy varies by population group, with terms such as "pharmacogenomics," "genetic testing," and "precision medicine" being more or less familiar to members of different groups.
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F or example, e additio engaging poppulations of interest requires care s efully tailored recruitment materials, a d t appropria language in consent forms, seek ate e king advice on recruitme ent strateg gies, demonst trating respect and value and offeri e, ing appropriaate compe ensation. FIGUR 3-1 A conc RE ceptual framew work for devel loping a measu of trust in b ure biomedic research dra on psychosocial and env cal aws vironmental inf fluencers.
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For example, safety net hospitals and community health centers that serve disadvantaged patient populations may not see genomic medicine as important relative to the health needs of their populations, such as substance abuse, hepatitis C infection, and HIV infection. "We need to
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It is possible for researchers to think about implementation too early in the process, particularly if they try to push a finding into the clinic prematurely, said Brian Mittman of Kaiser Permanente Research. "Those of us who are conducting research and developing innovative practices always feel very strongly that what we've developed needs to be implemented and spread about, when in fact we should be waiting until we have a good solid body of evidence." Nevertheless, planning for implementation and implementation research does need to start very early, he added.
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