Access to Care and Diabetes Management Among Older American Indians With Type 2 Diabetes.

OBJECTIVE: To examine the relationship between health care access and diabetes management among a geographically diverse sample of American Indians (AIs) aged 50 and older with type 2 diabetes. METHOD: We examined the relationship between access to care and diabetes management, as measured by HbA1c, using 1998-1999 data from the Strong Heart Family Study. A series of bivariate and multivariate linear models examined the relationships between nine access-related variables and HbA1c levels. RESULTS: In bivariate analyses, out-of-pocket costs were associated with higher HbA1c levels. No other access-related characteristics were significantly associated with diabetes management in bivariate or in multivariate models. DISCUSSION: Access-related barriers were not associated with worse diabetes management in multivariate analyses. The study concludes with implications for clinicians working with AI populations to enhance opportunities for diabetes management.

American Indian perspectives on evidence-based practice implementation: results from a statewide Tribal Mental Health Gathering.

Implementation of Evidence-Based Practices (EBP) within American Indian and Alaskan Natives communities is currently an area of debate and contention. There is considerable concern about expanding EBP policy mandates to AI/AN communities as these mandates, either through funding restrictions or other de facto policies, recall past histories of clinical colonization and exploitation by the state and federal government. As a response, work is being done to evaluate indigenous programs and examine strategies for culturally-sensitive implementation. While the literature reflects the perspectives of AI/AN populations on EBP generally, no one has yet reported the perspectives of AI/AN communities on how to feasibly achieve widespread EBP implementation. We report the findings of a statewide Tribal Gathering focused on behavioral health interventions for youth. The Gathering participants included AI/AN individuals as well as staff working with AI/AN populations in tribal communities. Participants identified strengths and weaknesses of the five legislatively fundable programs for youth delinquency in Washington State and discussed strategies likely to be effective in promoting increased uptake within tribes. Analysis of these discussions resulted in many useful insights in program-specific and community-driven strategies for implementation. In addition, two major themes emerged regarding widespread uptake: the importance of a multi-phase engagement strategy and adopting a consortium/learning community model for implementation. The findings from this Gathering offer important lessons that can inform current work regarding strategies to achieve a balance of program fidelity and cultural-alignment. Attending to engagement practices at the governance, community and individual level are likely to be key components of tribal-focused implementation. Further, efforts to embed implementation within a consortium or learning community hold considerable promise as a strategy for sustainability.

Exploring pathways to trust: a tribal perspective on data sharing.

The data-sharing policies of the National Institutes of Health aim to maximize public benefit derived from genetic studies by increasing research efficiency and use of a pooled data resource for future studies. Although broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports the tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research--such as tribally based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by the National Institutes of Health as part of the research process.

Developing Governance for Federated Community-based EHR Data Sharing.

Bi-directional translational pathways between scientific discoveries and primary care are crucial for improving individual patient care and population health. The Data QUEST pilot project is a program supporting data sharing amongst community based primary care practices and is built on a technical infrastructure to share electronic health record data. We developed a set of governance requirements from interviewing and collaborating with partner organizations. Recommendations from our partner organizations included: 1) partner organizations can physically terminate the link to the data sharing network and only approved data exits the local site; 2) partner organizations must approve or reject each query; 3) partner organizations and researchers must respect local processes, resource restrictions, and infrastructures; and 4) partner organizations can be seamlessly added and removed from any individual data sharing query or the entire network.

A history of ashes: an 80 year comparative portrait of smoking initiation in American Indians and Non-Hispanic whites--the Strong Heart Study.

The consequences of starting smoking by age 18 are significant. Early smoking initiation is associated with higher tobacco dependence, increased difficulty in smoking cessation and more negative health outcomes. The purpose of this study is to examine how closely smoking initiation in a well-defined population of American Indians (AI) resembles a group of Non-Hispanic white (NHW) populations born over an 80 year period. We obtained data on age of smoking initiation among 7,073 AIs who were members of 13 tribes in Arizona, Oklahoma and North and South Dakota from the 1988 Strong Heart Study (SHS) and the 2001 Strong Heart Family Study (SHFS) and 19,747 NHW participants in the 2003 National Health Interview Survey. The participants were born as early as 1904 and as late as 1985. We classified participants according to birth cohort by decade, sex, and for AIs, according to location. We estimated the cumulative incidence of smoking initiation by age 18 in each sex and birth cohort group in both AIs and NHWs and used Cox regression to estimate hazard ratios for the association of birth cohort, sex and region with the age at smoking initiation. We found that the cumulative incidence of smoking initiation by age 18 was higher in males than females in all SHS regions and in NHWs (p < 0.001). Our results show regional variation of age of initiation significant in the SHS (p < 0.001). Our data showed that not all AIs (in this sample) showed similar trends toward increased earlier smoking. For instance, Oklahoma SHS male participants born in the 1980s initiated smoking before age 18 less often than those born before 1920 by a ratio of 0.7. The results showed significant variation in age of initiation across sex, birth cohort, and location. Our preliminary analyses suggest that AI smoking trends are not uniform across region or gender but are likely shaped by local context. If tobacco prevention and control programs depend in part on addressing the origin of AI smoking it may be helpful to increase the awareness in regional differences.

LC Data QUEST: A Technical Architecture for Community Federated Clinical Data Sharing.

The University of Washington Institute of Translational Health Sciences is engaged in a project, LC Data QUEST, building data sharing capacity in primary care practices serving rural and tribal populations in the Washington, Wyoming, Alaska, Montana, Idaho region to build research infrastructure. We report on the iterative process of developing the technical architecture for semantically aligning electronic health data in primary care settings across our pilot sites and tools that will facilitate linkages between the research and practice communities. Our architecture emphasizes sustainable technical solutions for addressing data extraction, alignment, quality, and metadata management. The architecture provides immediate benefits to participating partners via a clinical decision support tool and data querying functionality to support local quality improvement efforts. The FInDiT tool catalogues type, quantity, and quality of the data that are available across the LC Data QUEST data sharing architecture. These tools facilitate the bi-directional process of translational research.

Facilitating health data sharing across diverse practices and communities.

Health data sharing with and among practices is a method for engaging rural and underserved populations, often with strong histories of marginalization, in health research. The Institute of Translational Health Sciences, funded by a National Institutes of Health Clinical and Translational Science Award, is engaged in the LC Data QUEST project to build practice and community based research networks with the ability to share semantically aligned electronic health data. We visited ten practices and communities to assess the feasibility of and barriers to developing data sharing networks. We found that these sites had very different approaches and expectations for data sharing. In order to support practices and communities and foster the acceptance of data sharing in these settings, informaticists must take these diverse views into account. Based on these findings, we discuss system design implications and the need for flexibility in the development of community-based data sharing networks.

Telepsychiatry with rural American Indians: issues in civil commitments.

The use of live interactive videoconferencing to provide psychiatric care, telepsychiatry, has particular relevance for improving mental health treatment to rural American Indian reservations. There is little literature on civil commitments in telepsychiatry and none specifically addressing this topic among American Indians. This article reviews telepsychiatry in the mental health care of American Indians, civil commitments and telepsychiatry in general, and the current state of civil commitments in American Indian communities. We conclude by considering commitment through telepsychiatry in rural reservations and offering guidelines to assist practitioners in navigating this challenging landscape. Civil commitments of American Indian patients residing in rural reservations can be successfully accomplished through videoconferencing by thoughtful and informed clinicians. However, much more work is needed in this area, including research into the cultural attitudes and perspectives towards commitments and further inquiry regarding potential legal precedents, as well as case reports and examples of this work.