Advancing genomics to improve health equity.

Health equity is the state in which everyone has fair and just opportunities to attain their highest level of health. The field of human genomics has fallen short in increasing health equity, largely because the diversity of the human population has been inadequately reflected among participants of genomics research. This lack of diversity leads to disparities that can have scientific and clinical consequences. Achieving health equity related to genomics will require greater effort in addressing inequities within the field. As part of the commitment of the National Human Genome Research Institute (NHGRI) to advancing health equity, it convened experts in genomics and health equity research to make recommendations and performed a review of current literature to identify the landscape of gaps and opportunities at the interface between human genomics and health equity research. This Perspective describes these findings and examines health equity within the context of human genomics and genomic medicine.

Best Practices for Conducting Clinical Trials With Indigenous Children in the United States.

We provide guidance for conducting clinical trials with Indigenous children in the United States. We drew on extant literature and our experience to describe 3 best practices for the ethical and effective conduct of clinical trials with Indigenous children. Case examples of pediatric research conducted with American Indian, Alaska Native, and Native Hawaiian communities are provided to illustrate these practices. Ethical and effective clinical trials with Indigenous children require early and sustained community engagement, building capacity for Indigenous research, and supporting community oversight and ownership of research. Effective engagement requires equity, trust, shared interests, and mutual benefit among partners over time. Capacity building should prioritize developing Indigenous researchers. Supporting community oversight and ownership of research means that investigators should plan for data-sharing agreements, return or destruction of data, and multiple regulatory approvals. Indigenous children must be included in clinical trials to reduce health disparities and improve health outcomes in these pediatric populations. Establishment of the Environmental Influences on Child Health Outcomes Institutional Development Award States Pediatric Clinical Trials Network (ECHO ISPCTN) in 2016 creates a unique and timely opportunity to increase Indigenous children's participation in state-of-the-art clinical trials.

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

Alaska Native and American Indian (AN/AI) people have negative research experiences, including lack of timely, respectful, and relevant communication about research findings. Southcentral Foundation (SCF), a tribally owned and operated health care organization in Alaska, has redesigned the health care system, enacted research policies, and established a research department which uses best practices of Community Engaged Research with AN/AI people. Department staff and community members, however, perceive significant limitations in the reach of and satisfaction with ongoing engagement and dissemination efforts. Background information is delineated which supports new approaches in research engagement using SCF as an example.

Approach and Methods of the 2016 Alaska Native Research Forum.

Southcentral Foundation, a tribal health organization serving Alaska Native and American Indian (AN/AI) people in southcentral Alaska, convened the Alaska Native Health Research Forum (Forum) for AN/AI people in May 2016. The purpose of the Forum was to obtain AN/AI community member feedback about sharing health research results. This article describes the funding mechanism that provided resources for the Forum and other factors that were considered when designing the Forum. This is followed by a description of how attendees were invited, the audience response system, and process used to collect quantitative data on participants and qualitative feedback from small group discussions with Forum attendees. Finally, we describe the quantitative and qualitative data analysis processes used to evaluate responses.

Community Dissemination in a Tribal Health Setting: A Pharmacogenetics Case Study.

Alaska Native and American Indian (AN/AI) people experience a disproportionate burden of health disparities in the United States. Including AN/AI people in pharmacogenetic research offers an avenue to address these health disparities, however the dissemination of pharmacogenetic research results in the community context can be a challenging task. In this paper, we describe a case-study that explores the preferences of AN/AI community members regarding pharmacogenetic research results dissemination. Results were presented as a PowerPoint presentation at the 2016 Alaska Native Health Research Forum (Forum). An audience response system and discussion groups were used to gather feedback from participants. Descriptive statistics were used to assess attendee understanding of the presentation content. Thematic analysis was used to analyze discussion group data. Forum attendees needed time to work through the concept of pharmacogenetics and looked for ways pharmacogenetics could apply to their daily life. Attendees found pharmacogenetics interesting, but wanted a simple description of pharmacogenetics. Community members were optimistic about the potential benefit pharmacogenetic medicine could have in the delivery of health care and expressed excitement this research was taking place. Researchers were urged to communicate throughout the study, not just end research results, to the community. Furthermore, attendees insisted their providers stay informed of research results that may have an impact on health care delivery. Conversational forms of dissemination are recommended when disseminating pharmacogenetic research results at the community level.

Disseminating the Results of a Depression Management Study in an Urban Alaska Native Health Care System.

Increased attention to diagnostic accuracy in depression screening and management within primary care has demonstrated inadequate care when patients prematurely discontinue recommended treatments such as medication and counseling. Decision-support tools can enhance the medical decision-making process. In 2010, the Southcentral Foundation (SCF) Research Department developed a stakeholder-driven decision support tool to aid in depression management. This paper describes feedback from attendees at SCF's 2016 Alaska Native Health Research Forum (Forum) regarding a dissemination product highlighting the aforementioned study. Forum attendees participated in a small group discussion and responded to a brief survey using the audience response system. Thematic analysis was conducted on data from the small group discussion. Overall, Forum attendees responded favorably to the dissemination product. Most agreed the presentation was clear, the amount of information presented was appropriate, and that results were presented in an interesting way. Small group discussion participants provided constructive feedback about why depression-related research results should be shared; how they believed results should be best shared; who results should be shared with; when and where results should be shared; and what level of research results should be shared. The stigma associated with depression treatment may be assuaged if results are shared in a way that normalizes support for depression treatment. Community member involvement in disseminating results has potential to make information more acceptable and meaningful.

Future Directions in Disseminating Research Findings to Urban Alaska Native People.

Southcentral Foundation (SCF), a tribal health organization based in Anchorage, Alaska, operates and plans health care services in response to the priorities and tribal values of Alaska Native and American Indian (AN/AI) people, including traditional concepts of wellness, reciprocity, and working in relationship. In an effort to better incorporate AN/AI priorities and values in research dissemination, the SCF Research Department hosted the Alaska Native Health Research Forum (Forum) in May 2016. In this paper, we describe the communication strategies used by the SCF Public Relations Department, which were shared with Forum attendees, describe attendee recommendations for researchers to consider and implement, and then discuss future directions for dissemination. Lessons learned through the Forum were 1) customer-owners are interested in learning more about research, 2) dissemination should be done throughout all stages of projects using a variety of media channels, and 3) SCF Research Department dissemination should continue to shape health care.

Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation.

Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.

Demographic, Clinical, and Service Utilization Factors Associated with Suicide-Related Visits among Alaska Native and American Indian Adults.

Alaska Native and American Indian people (AN/AIs) are disproportionately affected by suicide. Within a large AN/AI health service organization, demographic, clinical, and service utilization factors were compared between those with a suicide-related health visit and those without. Cases had higher odds of a behavioral health diagnosis, treatment for an injury, behavioral health specialty care visits, and opioid medication dispensation in the year prior to a suicide-related visit compared to gender-, age-, and residence- (urban versus rural) matched controls. Odds of a suicide-related visit were lower among those with private insurance and those with non-primary care ambulatory clinic visits.

Guideline concordant detection and management of depression among Alaska Native and American Indian people in primary care.

BACKGROUND: A tribal health organization in Alaska implemented a primary care depression screening, detection and management initiative amongst 55,000 Alaska Native/American Indian people (AN/AIs). OBJECTIVES: (a) To describe the proportion of AN/AIs screening positive for depression with depression noted or diagnosed and proportion with guideline concordant management and (b) to assess whether management varied by patient and provider factors. RESEARCH DESIGN: Secondary analysis of electronic and paper medical record information of 400 AN/AIs. MEASURES: Provider variables, patient demographics and patient clinical factors were electronically queried. Manual chart audits assessed depression notation, diagnoses and management within 12 weeks of positive screening. Multilevel ordinal logistic modelling assessed management by patient and provider factors. RESULTS: A depression diagnosis was present in 141 (35%) charts and 151 (38%) had depressive symptoms noted. Detection was higher among AN/AIs with moderate and severe depression (p<0.001). In total, 258 patients (66%) received guideline concordant management, 32 (8%) had some management, and 110 (28%) received no management. Younger patient age and increased provider tenure increased odds of management. CONCLUSIONS: Most AN/AIs screening positive for depression received initial guideline concordant management. Additional outreach to older patients and additional support for providers newer to practices appears warranted.

Risk, reward, and the double-edged sword: perspectives on pharmacogenetic research and clinical testing among Alaska Native people.

OBJECTIVES: Pharmacogenetic research and clinical testing raise important concerns for individuals and communities, especially where past medical research and practice has perpetrated harm and cultivated distrust of health care systems and clinicians. We investigated perceptions of pharmacogenetics among Alaska Native (AN) people. METHODS: We held four focus groups for 32 ANs in south central Alaska to elicit views about pharmacogenetics in general and for treatment of cardiovascular disease, breast cancer, depression, and nicotine addiction. We analyzed data for perceived risks and rewards of pharmacogenetics. RESULTS: Potential risks of pharmacogenetics included health care rationing, misuse of information, and stigma to individuals and the AN community. Potential rewards included decreased care costs, improved outcomes, and community development. Participants also discussed 8 contingent conditions that could mitigate risks and increase pharmacogenetic acceptability. CONCLUSIONS: Alaska Natives perceive pharmacogenetics as potentially benefitting and harming individuals, communities, and health systems, depending on methods and oversight. Researchers, clinicians, and administrators, especially in community-based clinic and health care systems serving minority populations, must address this "double-edged sword" to effectively conduct pharmacogenetics.

Tribal implementation of a patient-centred medical home model in Alaska accompanied by decreased hospital use.

BACKGROUND: Between 1995 and 1998, tribally owned Southcentral Foundation (SCF) incrementally assumed responsibility from the Indian Health Service (IHS) for primary care services on the Alaska Native Medical Center (ANMC) campus in Anchorage, Alaska. In 1999, SCF began implementing components of a Patient-Centered Medical Home (PCMH) model to improve access and continuity of care. OBJECTIVE: To evaluate hospitalisation trends before, during and after PCMH implementation. DESIGN: Time series analysis of aggregated medical record data. METHODS: Regression analysis with correlated errors was used to estimate trends over time for the percent of customer-owners hospitalised overall and for specific conditions during 4 time periods (March 1996-July 1999: SCF assumes responsibility for primary care; August 1999-July 2000: PCMH implementation starts; August 2000-April 2005: early post-PCMH implementation; May 2005-December 2009: later post-PCMH implementation). Analysis was restricted to individuals residing in Southcentral Alaska and receiving health care at ANMC. RESULTS: The percent of SCF customer-owners hospitalised per month for any reason was steady before and during PCMH implementation, declined steadily immediately following implementation and subsequently stabilised. The percent hospitalised per month for unintentional injury or poisoning also declined during and after the PCMH implementation. Among adult asthma patients, the percent hospitalised annually for asthma declined prior to and during implementation and remained lower thereafter. The percent of heart failure patients hospitalised annually for heart failure remained relatively constant throughout the study period while the percent of hypertension patients hospitalised for hypertension shifted higher between 1999 and 2002 compared to earlier and later years. CONCLUSION: Implementation of PCMH at SCF was accompanied by decreases in the percent of customer-owners hospitalised monthly for any reason and for unintentional injury and in the percent of asthma patients hospitalised annually for asthma. Increased accessibility to empanelled care teams may have contributed to decreased need for hospitalisation.

Alaska native people's perceptions, understandings, and expectations for research involving biological specimens.

OBJECTIVES: Members of racially and ethnically diverse groups have been persistently underrepresented in biomedical research in general, possibly due to mistrust with the medical and research community. This article describes the perceptions, understandings, and expectations of Alaska Native people about research involving the collection and storage of biological specimens. STUDY DESIGN: Stratified focus groups. METHODS: Twenty-nine focus groups with Alaska Native people (n = 178) were held in 14 locations using a semi-structured moderator guide. ATLAS.ti was used for thematic analysis through iterative readings and coding. Alaska Native peoples' perceptions, understandings, and expectations of researcher beneficence, informed consent processes, and provision of research findings were elicited. RESULTS AND CONCLUSIONS: Alaska Native people desired extensive disclosure of information beyond that typically provided in consent and results dissemination processes. Information germane to the motivation and intent of researchers and specifics of specimen storage and destruction were specifically requested. A clear and extensive process of informed consent and continued improvements in sharing results may enhance the transparency of research intent, conduct, and use of obtained results among Alaska Native people. Meeting expectations may improve relationships between researchers and the Alaska Native population which could result in increased research participation. Our findings offer a guide for researchers and communities when planning and implementing research with biological specimens.