Comprehensive Diabetes Assessment Instrument for Patients With Type 2 Diabetes.

AIMS: There is a paucity of efficient processes for collecting information in a primary care setting to connect patients afflicted with type 2 diabetes to valuable resources. The objective of this research project was to develop a Comprehensive Diabetes Assessment (CDA) instrument which could be used to assess patients' barriers to best outcomes. METHODS: We reviewed published literature and online compilations for validated tools assessing threats to optimal diabetes self-management. We conducted focus groups with patients, clinicians, and service providers who provided feedback on the tools' appropriateness and feasibility. We aggregated the favored tools and did cognitive testing with patients to assess understanding and affective response to the instrument. RESULTS: Five focus groups involved varied stakeholders in Baltimore, MD and Honolulu, HI. We presented 2 tools assessing knowledge barriers, 3 tools assessing psychological barriers, 4 tools assessing literacy, and 1 numeracy. The final instrument included 6 multi-part items and takes 3 minutes to complete. Cognitive interviewing with 8 patients in Baltimore and 8 in Hawaii confirmed that the instrument is understandable, quick to complete, and is acceptable to patients. CONCLUSIONS: Because of the complexity of self-management of diabetes, we suggest that this CDA instrument, plus a social needs assessment, should be administered at least annually and at times of clinical deterioration. We anticipate the instrument will be proven valuable in connecting patients to services from which they will benefit.

The PhenX Toolkit: Measurement Protocols for Assessment of Social Determinants of Health.

INTRODUCTION: Social determinants are structures and conditions in the biological, physical, built, and social environments that affect health, social and physical functioning, health risk, quality of life, and health outcomes. The adoption of recommended, standard measurement protocols for social determinants of health will advance the science of minority health and health disparities research and provide standard social determinants of health protocols for inclusion in all studies with human participants. METHODS: A PhenX (consensus measures for Phenotypes and eXposures) Working Group of social determinants of health experts was convened from October 2018 to May 2020 and followed a well-established consensus process to identify and recommend social determinants of health measurement protocols. The PhenX Toolkit contains data collection protocols suitable for inclusion in a wide range of research studies. The recommended social determinants of health protocols were shared with the broader scientific community to invite review and feedback before being added to the Toolkit. RESULTS: Nineteen social determinants of health protocols were released in the PhenX Toolkit (https://www.phenxtoolkit.org) in May 2020 to provide measures at the individual and structural levels for built and natural environments, structural racism, economic resources, employment status, occupational health and safety, education, environmental exposures, food environment, health and health care, and sociocultural community context. CONCLUSIONS: Promoting the adoption of well-established social determinants of health protocols can enable consistent data collection and facilitate comparing and combining studies, with the potential to increase their scientific impact.

Northwest Indigenous Art and the Inspiring Spirits.

Indigenous Art often expresses the complex culture of their creators and provides insight into the origins, histories, and values of that culture. Two examples of Northwest Indigenous Art suggest deeper meanings and the "power" of congenital anomalies.

Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

Correction to: Native Hawaiian Views on Biobanking.

The original version of this article unfortunately contained a mistake. The name of "Maile Taualii" is now corrected in the author group of this article.

Genomic Research Through an Indigenous Lens: Understanding the Expectations.

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples' engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Responsible Research With Urban American Indians and Alaska Natives.

American Indian and Alaska Native (AI/AN) communities harbor understandable mistrust of research. Outside researchers have historically controlled processes, promulgating conclusions and recommended policies with virtually no input from the communities studied. Reservation-based communities can apply sovereignty rights conferred by the federal government to change this research trajectory. Many tribes now require review and approval before allowing research activities to occur, in part through the development of regulatory codes and oversight measures. Tribal oversight ensures that research is directed toward questions of importance to the community and that results are returned in ways that optimize problem solving. Unfortunately, tribal governance protections do not always extend to AI/ANs residing in urban environments. Although they represent the majority of AI/ANs, urban Indians face an ongoing struggle for visibility and access to health care. It is against this backdrop that urban Indians suffer disproportionate health problems. Improved efforts to ensure responsible research with urban Indian populations requires attention to community engagement, research oversight, and capacity building. We consider strategies to offset these limitations and develop a foundation for responsible research with urban Indians.

Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).

Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.

Addressing the Challenges of Research With Small Populations.

Public health policy relies on accurate data, which are often unavailable for small populations, especially indigenous groups. Yet these groups have some of the worst health disparities in the United States, making it an ethical imperative to explore creative solutions to the problem of insufficient data. We discuss the limits of widely applied methods of data aggregation and propose a mixed-methods approach to data borrowing as a way to augment sample sizes. In this approach, community partners assist in selecting related populations that make suitable "neighbors" to enlarge the data pool. The result will be data that are substantial, accurate, and relevant to the needs of small populations, especially for health-related policy and decision-making at all levels.

Excess infant mortality among Native Hawaiians: identifying determinants for preventive action.

OBJECTIVES: We identified potential determinants and cause-specific sources of excess infant mortality among Native Hawaiians. METHODS: We compared infant mortality rates among Native Hawaiians and Whites by using data from the 2002 to 2009 Hawai'i State Linked Birth/Infant Death Cohort File. We evaluated the components of excess infant mortality by age and underlying cause of death as well as maternal sociodemographic, behavioral, and chronic condition disparities. RESULTS: The Native Hawaiian infant mortality rate was more than twice that for Whites (7.9 vs 3.5/1000 live births). Excess Native Hawaiian infant mortality was equally apportioned to neonatal and postneonatal deaths. Preterm-related causes of death accounted for 43.9% of the infant mortality disparity, followed by sudden unexpected infant death (21.6%) and injury (5.6%). In multivariable models, maternal educational inequality accounted for the largest portion of the neonatal mortality disparity (20.9%); younger maternal age (12.2%) and smoking (9.5%) were the only significant contributors to the postneonatal mortality disparity. CONCLUSIONS: Addressing educational inequalities, promoting safe sleep practices, and reducing smoking among Native Hawaiian mothers would help to eliminate excess infant mortality.

Reproductive health and sexual violence among urban American Indian and Alaska Native young women: select findings from the National Survey of Family Growth (2002).

Existing data on American Indians and Alaska Natives (AI/ANs) has indicated high rates of unintended pregnancy, high-risk sexual behavior, and experiences of sexual violence. This study from the first analysis to examine AI/ANs and the urban AI/AN subgroup in the National Survey of Family Growth (NSFG) reports new findings of reproductive health and sexual violence among urban AI/AN young women. We examined 2002 NSFG data on urban AI/AN women ages 15-24 years for pregnancies/births, unintended pregnancy, sexual initiation and contraceptive use. We also examined non-voluntary first sexual intercourse among urban AI/AN women ages 18-44 years. Prevalence estimates and 95 % confidence intervals were calculated. Findings include prevalence rates of risk factors among urban AI/AN women ages 15-24 years including unprotected first sex (38 %), first sex with much older partners (36 %), three or more pregnancies (13 %) and births (5 %) and unintended pregnancies (26 %). Seventeen percent of urban AI/ANs ages 18-44 years reported experiencing non-voluntary first sex. Sixty-one percent of urban AI/AN women ages 15-24 years were not using any method of contraception. Current contraceptive methods among those using a method included: injections/implants (23 %), contraceptive pills (32 %) and condoms (25 %). Findings describe reproductive health risk factors among young urban AI/AN women and highlight the need for enhanced surveillance on these issues. Those working to improve AI/AN health need these data to guide programming and identify resources for implementing and evaluating strategies that address risk factors for this overlooked population.

Including self-reported race to improve cancer surveillance data for American Indians and Alaska Natives in Washington state.

BACKGROUND: American Indians and Alaska Natives (AI/AN) are frequently misclassified as another race in cancer surveillance systems, resulting in underestimated morbidity and mortality. Linkage methods with administrative records have been used to correct AI/AN misclassification, but AI/AN populations living in urban areas, and those who self-identify as AI/AN race, continue to be under-ascertained. The aim of this study was to evaluate racial misclassification in two cancer registries in Washington State using an urban AI/AN patient roster linked with a list of Indian Health Service (IHS) enrollees. METHODS: We conducted probabilistic record linkages to identify racial misclassification using a combined demographic dataset of self-identified AI/AN patients of a large, urban Indian health center, and administratively-identified AI/AN enrolled with the IHS. Age-adjusted incidence rates were calculated for 3 linkage populations: AI/ AN originally coded in each cancer registry, post-linkage AI/AN identified through the IHS roster alone, and post-linkage AI/AN identified through either the urban or IHS file. RESULTS: In the state and regional cancer registries, 11% and 18%, respectively, of matched cases were originally coded as a race other than AI/AN; approximately 35% of these were identified by the urban file alone. Incidence rate estimates increased after linkage with the IHS file, and further increased with the addition of urban records. Matches identified by the urban patient file resulted in the largest relative incidence change being demonstrated for King County (which includes Seattle); the all-site invasive cancer rate increased 8.8%, from 443 to 482 per 100,000. CONCLUSIONS: Inclusion of urban and self-identified AI/AN records can increase case ascertainment in cancer surveillance systems beyond linkage methods using only administrative sources.

Adaptation of a smoking cessation and prevention website for urban American Indian/Alaska Native youth.

Tobacco use among American Indian youth is a disproportionately significant problem. We adapted and modified an existing web-based and youth-focused tobacco control program to make it appropriate for young urban American Indian/Alaska Natives (AI/ANs). The results of the focus group indicate that AI/AN youth were very receptive to the use of a web-based Zine-style intervention tool. They wanted the look and feel of the website to be more oriented toward their cultural images. Future research should examine if successful programs for reducing non-ceremonial tobacco use among urban AI/AN youth can keep young irregular smokers from becoming adult smokers.

Indigenous Birth Outcomes in Australia, Canada, New Zealand and the United States - an Overview.

OBJECTIVE: To review Indigenous infant mortality, stillbirth, birth weight, and preterm birth outcomes in Australia, Canada, New Zealand and the United States. METHODS: Systematic searches of published literature and a review and assessment of existing perinatal surveillance systems were undertaken. Where possible, within country comparisons of Indigenous to non-Indigenous birth outcomes are included. RESULTS: Indigenous/non-Indigenous infant mortality rate ratios range from 1.6 to 4.0. Stillbirth rates, where data are available, are also uniformly higher for Indigenous people. In all four countries, the disparities in Indigenous/non-Indigenous infant mortality rate ratios are most marked in the post-neonatal period. With few exceptions, the rates of leading causes of infant mortality are higher among Indigenous infants than non-Indigenous infants within all four countries. In most cases, rates of small for gestational age and preterm birth were also elevated for Indigenous compared to non-Indigenous infants. CONCLUSIONS: There are significant disparities in Indigenous/non-Indigenous birth outcomes in Australia, Canada, New Zealand and the United States. These Indigenous/non-Indigenous birth outcome disparities fit the criteria for health inequities, as they are not only unnecessary and avoidable, but also unfair and unjust.

Urban American Indian and Alaska Native youth: youth risk behavior survey 1997-2003.

OBJECTIVE: To examine the prevalence of health risk-behaviors among American Indian/Alaska Native (AI/AN) youth in urban areas. METHODS: Data from the national Youth Risk Behavior Survey (YRBS) for the years 1997-2003 were used for the analyses (Urban sample = 52,364). The YRBS is a self-report questionnaire administered to a sample of 9th-12th grade students intended to monitor health risk-behaviors. "Urban" is defined as areas within a Metropolitan Statistical Area. Whites are used as the comparison group for the examination of AI/AN estimates. RESULTS: Urban AI/AN youth represented 1% of the urban sample (N = 513). The presence of a number of risk-behaviors were at least threefold higher in AI/AN compared to white youth in urban areas, including suicidal behaviors, feeling unsafe at school and needing medical treatment from a fight. Other factors were over twofold higher among AI/AN, including sexual behaviors, illegal drug use, violence at school, and experiences of rape, assault and pregnancy. CONCLUSIONS: The higher prevalence of health risk-behaviors in urban AI/AN compared to white youth reflects a need for interventions focused on urban AI/AN youth.

Implementation and use of an electronic health record within the Indian Health Service.

OBJECTIVES: There are limited data regarding implementing electronic health records (EHR) in underserved settings. We evaluated the implementation of an EHR within the Indian Health Service (IHS), a federally funded health system for Native Americans. DESIGN: We surveyed 223 primary care clinicians practicing at 26 IHS health centers that implemented an EHR between 2003 and 2005. METHODS: The survey instrument assessed clinician attitudes regarding EHR implementation, current utilization of individual EHR functions, and attitudes regarding the use of information technology to improve quality of care in underserved settings. We fit a multivariable logistic regression model to identify correlates of increased utilization of the EHR. RESULTS: The overall response rate was 56%. Of responding clinicians, 66% felt that the EHR implementation process was positive. One-third (35%) believed that the EHR improved overall quality of care, with many (39%) feeling that it decreased the quality of the patient-doctor interaction. One-third of clinicians (34%) reported consistent use of electronic reminders, and self-report that EHRs improve quality was strongly associated with increased utilization of the EHR (odds ratio 3.03, 95% confidence interval 1.05-8.8). The majority (87%) of clinicians felt that information technology could potentially improve quality of care in rural and underserved settings through the use of tools such as online information sources, telemedicine programs, and electronic health records. CONCLUSIONS: Clinicians support the use of information technology to improve quality in underserved settings, but many felt that it was not currently fulfilling its potential in the IHS, potentially due to limited use of key functions within the EHR.

A nationwide population-based study identifying health disparities between American Indians/Alaska Natives and the general populations living in select urban counties.

OBJECTIVES: Despite their increasing numbers, little is known about the health of American Indians/Alaska Natives living in urban areas. We examined the health status of American Indian/Alaska Native populations served by 34 federally funded urban Indian health organizations. METHODS: We analyzed US census data and vital statistics data for the period 1990 to 2000. RESULTS: Disparities were revealed in socioeconomic, maternal and child health, and mortality indicators between American Indians/Alaska Natives and the general populations in urban Indian health organization service areas and nationwide. American Indians/Alaska Natives were approximately twice as likely as these general populations to be poor, to be unemployed, and to not have a college degree. Similar differences were observed in births among mothers who received late or no prenatal care or consumed alcohol and in mortality attributed to sudden infant death syndrome, chronic liver disease, and alcohol consumption. CONCLUSIONS: We found health disparities between American Indians/Alaska Natives and the general populations living in selected urban areas and nationwide. Such disparities can be addressed through improvements in health care access, high-quality data collection, and policy initiatives designed to provide sufficient resources and a more unified vision of the health of urban American Indians/Alaska Natives.