Perceptions of Pharmacogenetic Research to Guide Tobacco Cessation by Patients, Providers and Leaders in a Tribal Healthcare Setting

Avey, Jaedon P; Hiratsuka, Vanessa Y.; Beans, Julie A.; Trinidad, Susan Brown; Tyndale, Rachel F.; Robinson, Renee

doi:10.2217/pgs.15.177

Cited by 17 publications

(14 citation statements)

References 41 publications

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“…Our study also found mixed views among participants about sharing their pharmacogenomic information with pharmacists, in contrast with other studies where ≥ 70% of individuals would share their results with their pharmacists [10,13]. Additionally, we found that both genotyped and non-genotyped participants held concerns over insurance coverage, employment discrimination, and cost implications of pharmacogenomic-guided care, all of which have similarly been reported in previous studies [9,11–13,23–25]. As cost/reimbursement considerations remain one of the greatest barriers to more universal adoption of pharmacogenomics, these considerations will need to be addressed via practice-based or institutional standards during early phases of implementation.…”

Section: Discussionsupporting

confidence: 57%

Assessment of patient perceptions of genomic testing to inform pharmacogenomic implementation

Lee

McKillip

Borden

et al. 2017

Pharmacogenetics and Genomics

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OBJECTIVE Pharmacogenomics seeks to improve prescribing by reducing drug inefficacy/toxicity. However, views of patients during pharmacogenomic-guided care are largely unknown. We sought to understand attitudes and perceptions of patients in an institutional implementation project and hypothesized that views would differ based on experience with pharmacogenomic-guided care. METHODS Two focus groups were conducted–one group consisted of patients who had previously submitted to broad pharmacogenomic genotyping with results available to physicians (pharmacogenomic group), while the other had not been offered genotyping (traditional care). Five domains were explored: 1) experiences with medications/side-effects, 2) understanding of pharmacogenomics, 3) impact of pharmacogenomics on relationships with healthcare professionals, 4) scenarios involving pharmacogenomic-guided prescribing, and 5) responses to pharmacogenomic education materials. RESULTS Nine pharmacogenomic and 13 traditional care participants were included. Participants in both groups agreed pharmacogenomics could inform prescribing and help identify problem prescriptions, but expressed concerns over insurance coverage and employment discrimination. Both groups diverged on who should be permitted to access pharmacogenomic results, with some preferring access only for providers with a longstanding relationship, while others argued for open-access. Notably, traditional care participants showed greater skepticism about how results might be used. Case scenarios and tested educational materials elicited strong desires on the part of patients for physicians to engage participants when considering pharmacogenomic-based prescribing, and to utilize shared decision-making. CONCLUSION Participants experiencing pharmacogenomic-guided care were more receptive toward pharmacogenomic information being used than traditional care participants. As key stakeholders in implementation, addressing patients’ concerns will be important to successfully facilitate clinical dissemination.

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Section: Discussionsupporting

confidence: 57%

Assessment of patient perceptions of genomic testing to inform pharmacogenomic implementation

Lee

McKillip

Borden

et al. 2017

Pharmacogenetics and Genomics

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“…Communicating these practices of transparency helps to solidify trust with the ANAI community by showing how researchers are working to include the ANAI community in the research process as early as possible. The views shared in the community deliberation echo participant feedback from ANAI community focus groups from over a decade ago [12,43], and other qualitative inquiry more recently conducted at SCF [13,15,17,25].…”

Section: Discussionmentioning

confidence: 62%

“…Moreover, genetic research in ANAI communities must address areas of known disparities, clearly delineate potential health benefits and risks, and provide adequate protections against individual and group harm [11,12]. ANAI communities expect transparent research practices that include tribal oversight and approval of the research, a robust informed consent process, and dissemination of study updates and findings throughout the research project [13][14][15][16][17]. Research partnerships that have taken the time to meet these expectations resulted in equitable partnerships with novel genetic findings [14,16,[18][19][20].…”

Section: Introductionmentioning

confidence: 99%

“…As genetic research advances and genetic testing yields medically actionable results, genetic testing will most likely increase in clinical practice, including tribal healthcare. Previous published qualitative work shows that ANAI community members are interested in receiving results from health research projects at both a community and individual level [17,24,25]. The return of genetic research results raises important value laden questions for ANAI communities to consider.…”

Section: Introductionmentioning

confidence: 99%

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An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

et al. 2020

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As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.

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“…Of 20 permanent SCF Research Department employees, 15 have AN/AI heritage, not counting available AN/AI intern positions at the pre-baccalaureate, baccalaureate, and graduate levels. In further engagement with the community, the SCF Research Department conducted qualitative research asking AN/AI people to consider the cultural and ethical implications of different types of research, such as genetic research, and to comment upon research processes like informed consent, data and specimen storage, and return of results (Avey et al, 2016; Hiratsuka, Brown, & Dillard, 2012; Shaw, Robinson, Starks, Burke, & Dillard, 2013; Starks, Shaw, Hiratsuka, Dillard, & Robinson, 2015; Woodahl et al, 2014). Subsequently, the SCF Research Department implemented improvements in the informed consent process and the storage of data and specimens in local repositories with AN oversight (Hiratsuka, Brown, & Dillard, 2012; Hiratsuka, Brown, Hoeft, & Dillard, 2012).…”

Section: Southcentral Foundation’s Research Departmentmentioning

confidence: 99%

Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska

Dillard¹,

Caindec²,

Dirks³

et al. 2018

AIANMHR

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AMERICAN INDIAN AND ALASKA NATIVE MENTAL HEALTH RESEARCH i FOREWORDWe are delighted to showcase a unique process for reaching out to, engaging, and disseminating research conducted among Alaska Native people. The Southcentral Foundation, notably its Research Department, led by Dr. Denise Dillard and her colleagues -the authors of this special issue − is widely respected for its deep commitment to pursuing research relevant to its customer/owners. Indeed, simply referring to their patient population in this fashion underscores the alignment of their mission, values, and actions. Frankly, I know of no other entity, tribal or otherwise, so fully dedicated in principal as well as practice to ensuring that its research is driven by stakeholders, that the results are translated into terms meaningful to them, that the findings reflect their perspectives, that the attendant insights are applied with local benefit, and that this work is undertaken in a scientifically rigorous manner that contributes to our understanding of the health and well-being of this special population. The articles herein testify to the effort required of such work and the potential return on investment for all participants.Unfortunately, much of today's conversation about outreach to, engagement of, and dissemination among Native communities proceeds at a level of abstraction that offers little guidance about actual process. Not so here. The authors describe in detail the nature of their research, steps taken to communicate findings to key stakeholders, the latter's reactions, and implications for this process. Their candid discussion of the challenges that arose during this endeavor represents a refreshingly authentic analysis of a difficult subject, the mechanics of which are often glossed over in the rush to exhort others to engage tribal communities. Of particular value is the authors' reflection on how the communication strategies available to them through the Southcentral Foundation can be mobilized to maintain the momentum of their initial efforts and to reinforce the reciprocity as well as transparency that characterized this undertaking. The lessons learned, and shared in the pages to follow, are important ones. Thank you for stretching yourselves beyond the typical role of researcher-as-scientist to illustrate these lessons and the wisdom contained therein. Beyond this introduction, the special issue consists of three sections. Section I describes the background information shared with Forum attendees, the structure and content of the Forum itself, and the methods used to gather community feedback. Section II depicts three SCF research studies that disseminated results differently, along with community feedback about clarity of results, sufficiency of information, and the degree to which information was presented in an interesting way. The three research studies concern dissemination of results from a T-SBIRT (i.e., trauma-focused screening, brief intervention, and referral to treatment) process, a stakeholder-driven decision support to...

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Perceptions of Pharmacogenetic Research to Guide Tobacco Cessation by Patients, Providers and Leaders in a Tribal Healthcare Setting

Cited by 17 publications

References 41 publications

Assessment of patient perceptions of genomic testing to inform pharmacogenomic implementation

Assessment of patient perceptions of genomic testing to inform pharmacogenomic implementation

An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska

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