Identifying Priorities and Strategies for Improving Colorectal Cancer Screening in Tribal Clinics.

BACKGROUND: Colorectal cancer (CRC) is the 3rd most frequently diagnosed cancer and the 2nd leading cause of cancer death in the United States (US), and incidence and mortality rates in Oklahoma are higher for many American Indian (AI) populations than other populations. The AI CRC Screening Consortium addresses major regional CRC screening disparities among AIs with shared objectives to increase CRC screening delivery and uptake in AIs aged 50 to 75 years at average risk for CRC and to assess the effectiveness of implementations of the interventions. This manuscript reports environmental scan findings related to current practices and multi-stakeholder experiences with CRC screening in two Oklahoma Indian health care systems. METHOD: We conducted a mixed methods environmental scan across five clinical sites and with multiple stakeholders to determine the scope and scale of colorectal cancer screening in two separate AI health care delivery systems in Oklahoma. Data collection consisted of a mixture of individual interviews and group discussions at an urban site, and four clinical care sites within a tribal health system. RESULTS: Sixty-two individuals completed interviews. Data from these interviews will inform the development of evidence-based intervention strategies to increase provider delivery, community access to, and community priority for CRC screening in diverse AI health care delivery systems. Conversations with patients, providers, and clinical leadership point to individual and system-level opportunities for improvement at each site, shaped in part by differences in the delivery of services, structure of the health care system, and capacity to implement new intervention strategies. The thematic areas most central to the process of evidenced-based intervention development included: current practices, needs and recommendations, and CRC site priorities. CONCLUSION: Environmental scan data indicated clear opportunities for individual and system-level interventions to enhance CRC screening and was critical for understanding readiness for EBI implementation at each site.

Measuring disparities in event-free survival among children with acute lymphoblastic leukemia in an academic institute in Oklahoma, 2005-2019.

BACKGROUND: Acute lymphoblastic leukemia (ALL) is the most common type of childhood cancer. While there have been successes in the treatment of leukemia, less information is available on reasons for disparities in event-free survival (EFS) among underserved populations. METHODS: We partnered with a children's hospital at an academic institution to abstract data from the institution's cancer registry, the state cancer registry, and electronic medical records on cancer diagnosis, treatment, and outcomes for children with ALL (n = 275) diagnosed from 2005 to 2019 prior to age 20. We evaluated the relation between 1) race/ethnicity, 2) distance to the children's hospital, and 3) area deprivation with EFS, defined as time from diagnosis to relapse, death, or the end of the study period. We evaluated differences in EFS using Kaplan-Meier analysis with the log-rank test. We used the Cox Proportional Hazards Model for multivariable survival analyses. RESULTS: Most children were diagnosed with ALL under five years of age (45%) and with Pre-B ALL (87%). Twelve percent of children experienced a relapse and 5% died during induction or remission. EFS at 5 years was 82%. Non-Hispanic (NH) Black children had worse, though imprecise, EFS compared to NH White children (Adjusted Hazard Ratio: 2.07, 95% CI: 0.80, 5.38). Children residing in areas with higher deprivation had a higher adjusted hazard of poor outcomes compared to the least deprived areas, though estimates were imprecise (2nd quartile HR: 1.51, 3rd quartile: 1.85, 4th quartile: 1.62). We observed no association between distance to the children's hospital and EFS. CONCLUSION: We observed poorer EFS for NH Black children and children residing in areas with high deprivation, though the estimates were not statistically significant. Our next steps include further evaluating socioeconomic factors in both rural and urban children to identify disparities in outcomes for children with ALL and other childhood cancers.

Hospital dentistry litigation in England: clinical negligence claims against the NHS 2015-2020.

Introduction Litigation against the NHS in England is rising. The aim of this study was to determine the incidence and characteristics of hospital dentistry clinical negligence claims in England.Methods A retrospective review was undertaken of all clinical negligence claims in England held by NHS Resolution relating to hospital dentistry between April 2015 and April 2020. Analysis was performed using the information for cause, patient injury and claim cost.Results A total of 492 claims were identified, with an estimated potential cost of £14 million. The most frequent causes for clinical negligence claims included failure/delay in treatment (n = 175; £3.9 million), inappropriate treatment (n = 56; £1.8 million) and failure to warn/obtain informed consent (n = 37; £1.5 million). Wrong site surgery was cited in 33 claims. The most frequent injury reported was dental damage (n = 197; £4.3 million), unnecessary pain (n = 125; £2.3 million) and nerve damage (n = 52; £2.4 million).Conclusion Clinical negligence claims in hospital dentistry are related to several different aspects of patient management and are not limited to treatment complications alone. Human ergonomics and patient perception of dentistry cannot be controlled but a focus on patient safety measures and effective communication can serve as tools to combat these factors.

The use of mixed reality in dentistry.

Augmented reality (AR) was first described in the literature in the 1990s. It has been shown as a futuristic concept in television, film and media, and now in the twenty-first century has become a reality. AR is defined as an interactive experience of a real-world environment where the object that resides in the real world is enhanced by computer-generated perceptual information.Microsoft HoloLens is a mixed reality device which has the capability to provide a real-time, three-dimensional platform using multiple sensors and holographic processing to display information and even simulate a virtual world. With rapidly evolving technology and virtual learning on the increase, the HoloLens technology can be used as a vital tool for dental education and surgical planning. However, within dentistry at present, there is limited research regarding its benefits and potential.The authors would like to demonstrate the use of HoloLens in three common oral surgery procedures and how it can be used to distinguish anatomy and benefit surgical planning, aid in patient communication and play a role in dental education.

Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics.

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

COVID-19 - the impact on wellbeing of the dental team in a secondary care urgent dental hub.

Introduction Dentistry in the UK has been thrown into turmoil as COVID-19 made its mark on the nation. The sudden shift in daily life has had a huge impact on the dental workforce. As the pandemic continues to ravage across the globe, we must look at ways of maintaining patient care and the wellbeing of staff. It becomes prudent to reflect on experiences to date and lessons learnt, which is illustrated through this study investigating the effect on the wellbeing of the dental team in a single unit hospital setting.Materials and methods Fourteen focus groups were held including multiple grades on a voluntary basis, with a discussion schedule including suitable prompts. Responses were transcribed, maintaining anonymity throughout, and thematic analysis was performed on the verbatim transcript to identify common themes and direct quotes.Results Key themes that were highlighted included anxiety, safety concerns, teamwork, family and redeployment. The themes of anxiety and safety were further explored, identifying participant discussion of feeling isolated, confusion, and specific concerns about PPE and transport to work.Conclusion This study identifies reasons to establish support networks for the dental workforce across the UK, highlighting the true adaptability of the dental team and the ability to break barriers to aid in combating a global pandemic.

Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

BACKGROUND: This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received. METHODS: We adapted democratic deliberation, an approach to stakeholder engagement, for use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation. RESULTS: A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement. CONCLUSION: The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described.

Deliberations About Genomic Research and Biobanks With Citizens of the Chickasaw Nation.

Amid the rapid growth of precision medicine and biobanking initiatives, there have been few efforts at cataloging the implications of these initiatives for Indigenous communities. A consortium involving a university and three American Indian/Alaska Native (AIAN) community partners is working to promote deliberation and dialog in AIAN communities about the potential benefits and risks of genomic research for those communities. The first of the consortium's three planned deliberations was held in September 2018 with citizens of the Chickasaw Nation, a federally recognized tribe in south-central Oklahoma with a full-service medical center and growing research capacity and oversight. Consortium members and the Chickasaw Nation Department of Health Administration designed a deliberative forum for Chickasaw citizens to consider the potential benefits and risks of participating in genomic research and biobanks. In this manuscript, we describe the deliberative method used in this event and report on the ideas discussed during the tribal citizens' deliberations. Chickasaw citizens identified many risks and benefits associated with genomic research and biobanks, including the potential for medical advancements that might benefit the Chickasaw community as well as the possibility of discrimination against the Chickasaw people. Although participants thought the potential benefits outweighed the potential risks, that moral calculation was contingent on whether control of the research and biobanks rested with Chickasaw leadership, researchers, and citizens.

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

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.

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.

Persistent, unresolved issues stemming from a legacy of scientific exploitation and bio-colonialism have kept many tribal nations from participating in genomic research. The Center for the Ethics of Indigenous Genomic Research (CEIGR) aims to model meaningful community engagement that moves toward more inclusive and equitable research practices related to genomics. This article reflects on key successes and challenges behind CEIGR's efforts to shape Ethical, Legal and Social Implications (ELSI) research in ways that are informed by Indigenous perspectives, to locate community partnerships at the center of genomics research, and to conduct normative and empirical research with Indigenous communities that is grounded in the concepts of reciprocity, transparency and cultural competency. The structure of CEIGR represents an important shift away from a traditional model centered on a university-based principal investigators toward a partner-centered research approach that emphasizes equity and community control by distributing power and decision-making across all CEIGR partner sites. We discuss three features of CEIGR that have contributed to this shift towards an equitable, community-driven partnership: 1) balancing local priorities with collective goals; 2) distributing power in ways that promote equitable partnerships; and 3) capacity building and co-learning across partner sites. The discussion of these three areas in this article speaks to a particular strength of our Center: the interdependence among partners and collective willingness to maintain a plasticity of leadership that creates space for all of our partners to lead, support, exchange and strengthen ELSI research.

Deliberative democracy and historical perspectives on American Indian/Alaska native political decision-making practices.

Public deliberation has risen to the forefront of governance as a technique for increasing participation in policy making. Scholars and practitioners have also noted the potential for deliberation to give greater influence to historically marginalized populations, such as Indigenous peoples. However, there has been less attention paid to the potential fit between the ideals of deliberation and the governance and decision making practices of American Indian and Alaska Native (AI/AN) peoples. In this paper, we begin to address this gap by analyzing accounts of AI/AN governance from the perspective of deliberation, and note areas of overlap, synergy, and conflict. We conduct a close reading of key historical and ethnographic accounts of four historical AI/AN contexts-the Iroquois Confederation under the Great Law of Peace, 19th century accounts of the Ojibwa village, the Santa Clara Pueblo government in pre-19th century, and Yup'ik village life in the early 20th century-and a more contemporary case in the form of the Santa Clara Pueblo's Constitution from the Indian Reorganization Act period. We then apply two sets of key criteria for deliberative democracy-from the scholars Robert Dahl and John Gastil-to these accounts and note the ways in which each system is or is not congruent with these frameworks of deliberation. We find variations between these historical tribal contexts in our analysis. Social components of deliberation, such as respectful discussion and equal opportunities to participate, were partially or fully present in many accounts of governance practices, but it was less clear whether the analytic components, such as discussion of a range of solutions, were included in some forms of tribal governance. We then explore the potential implications of our findings for public deliberation within and in AI/AN tribes. We note that deliberative scholars and practitioners should be wary of over-generalizing about AI/AN tribes.

Analyzing free-text survey responses: An accessible strategy for developing patient-centered programs and program evaluation.

Despite widespread availability of yoga in the Veterans Health Administration (VA), it remains unclear how to best evaluate yoga programs. This is particularly problematic for programs aimed at veterans with mental health concerns, as evaluation typically focuses narrowly upon mental health symptom severity, even though program participants may have other health-related priorities. We analyzed responses to free-text questions on 237 surveys completed by veterans with mental health concerns enrolled in a yoga program at six VA clinics in Louisiana to characterize veteran participants' experiences with yoga. Qualitative analysis resulted in 15 domains reflecting veterans' individual health-related values and priorities. We use results to illustrate the potential for analysis of free-text responses to reveal valuable insights into patient experiences, demonstrating how these data can inform patient-centered program evaluation. The approach we present is more accessible to those responsible for decision-making about local programs than conventional methods of analyzing qualitive evaluation data.

Complications of Self-Injected Facial Fillers: A Treatment Conundrum in the UK.

There has been a rise in nonsurgical cosmetic procedures seen within the UK population in the past decade. A change in legislation has placed restrictions on the distribution and provision of such treatments. Therefore, patients may seek alternative methods to bring about a change to their appearance, such as self-injection of a filler. Complications may include oral ulceration, foreign body tissue reaction, and infection due to a lack in sterility during injection. Such presentations may mimic that of oral cancer and can lead to misdiagnoses and undue cost to the National Health Service. This case highlights the common features leading to correct identification of patients self-injecting with facial fillers and discusses the controversy surrounding the economic aspects of their care. We would like to report one such case presenting to our oral and maxillofacial surgical unit.

Attitudes of dental undergraduate students towards patient safety in a UK dental school.

OBJECTIVES: Patient safety is an important issue in health care. In the United Kingdom, wrong site tooth extraction contributes to a significant proportion of adverse or harmful events, coined "never events." Therefore, patient safety within the field of dentistry is of paramount importance. This novel study aims to explore the teaching of patient safety to undergraduate dental students and their current attitudes to the subject. METHODS: Focus groups were held at Barts' and The London School of Medicine and Dentistry, QMUL in 2018 to ascertain the views and opinions of thirteen third-year dental undergraduate students. RESULTS: Thematic analysis was performed on verbatim transcripts. Key themes were highlighted. All students could provide a complete definition of patient safety and of "never events," with examples. There was a strong emphasis upon awareness of one's own competence and the need for effective communication to maintain patient safety. Small group teaching and the requirement for standardization of teaching were encouraged. The challenge of incorporation of the patient safety concept into the clinical routine without causing repetition during teaching was highlighted. CONCLUSION: The results show a positive attitude towards the concept and the teaching of patient safety. All students understood patient safety concepts and techniques used to prevent adverse or harmful events. This study proves that teaching on the subject was thought to be of value. It is crucial that the teaching of patient safety is introduced and built upon within the early years of dental undergraduate training so that its practice becomes second nature.

"We Don't Need a Swab in Our Mouth to Prove Who We Are": Identity, Resistance, and Adaptation of Genetic Ancestry Testing among Native American Communities.

Genetic ancestry testing (GAT) provides a specific type of knowledge about ancestry not previously available to the general public, prompting questions about the conditions whereby genetic articulations of ancestry present opportunities to forge new identities and social ties but also new challenges to the maintenance of existing social structures and cultural identities. The opportunities and challenges posed by GAT are particularly significant for many indigenous communities-whose histories are shaped by traumatic interactions with colonial powers and Western science-and for whom new applications of GAT may undermine or usurp long-standing community values, systems of governance, and forms of relationality. We conducted 13 focus groups with 128 participants and six in-depth, semistructured interviews with a variety of community leaders examining the perceptions of GAT within indigenous communities across Oklahoma. Our interviews and focus groups suggest that participants-through the articulation of indigeneity as experiential and relational in nature and inherently distinct from genetic notions of ancestry-resist much of the challenge presented by GAT in usurping traditional forms of identity while at the same time recognizing the utility of the technology for tracing unknown ancestry and identifying health risks in the community.

Genes, Race, and Causation: US Public Perspectives About Racial Difference.

Concerns have been raised that the increase in popular interest in genetics may herald a new era within which racial inequities are seen as 'natural' or immutable. In the following study, we provide data from a nationally representative survey on how the US population perceives general ability, athleticism, and intellect being determined by race and/or genetics and whether they believe racial health inequities to be primarily the product of genetic or social factors. We find that self-described race is of primary importance in attributing general ability to race, increasing age is a significant factor in attributing athleticism and intellect to genes and race, and education is a significant factor in decreasing such racially and genetically deterministic views . Beliefs about the meaning of race are statistically significantly associated with respect to the perception of athletic abilities and marginally associated with the perception of racial health inequalities being either socially or genetically derived. Race, education, socioeconomic status, and concepts of race were frequently found to be multiplicative in their statistical effects. The persistent acceptance of a genetically and racially deterministic view of athleticism among the White and older population group is discussed in respect to its social impact, as is the high level of agreement that general abilities are determined by race among non-White respondents and those of lower socioeconomic status. We argue that these findings highlight that both biological and non-biological forms of understanding race continue to play a role into the politics of race and social difference within contemporary US society.

Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities.

Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-to-consumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways. Priority areas include issues related to participant recruitment and tribal advisory boards, challenges of self-identification as a recruitment mechanism, and the necessity of including Indigenous researchers in all aspects of the research process.

Stakeholder engagement: a model for tobacco policy planning in Oklahoma Tribal communities.

BACKGROUND: Oklahoma law pre-empts local governments from enacting smoking restrictions inside public places that are stricter than state law, but the sovereign status of Oklahoma's 38 Tribal nations means they are uniquely positioned to stand apart as leaders in the area of tobacco policy. PURPOSE: To provide recommendations for employing university-Tribal partnerships as an effective strategy for tobacco policy planning in tribal communities. METHODS: Using a community-based participatory research approach, researchers facilitated a series of meetings with key Tribal stakeholders in order to develop a comprehensive tobacco policy plan. Ongoing engagement activities held between January 2011 and May 2012, including interdepartmental visits, facility site tours, interviews, and attendance at tribal activities, were critical for fostering constructive and trusting relationships between all partners involved in the policy planning process. RESULTS: The 17-month collaborative engagement produced a plan designed to regulate the use of commercial tobacco in all Tribally owned properties. The extended period of collaboration between the researchers and Tribal stakeholders facilitated: (1) levels of trust between partners; and (2) a steadfast commitment to the planning process, ensuring completion of the plan amid uncertain political climates and economic concerns about tobacco bans. CONCLUSIONS: Extended engagement produced an effective foundation for policy planning that promoted collaboration between otherwise dispersed Tribal departments, and facilitated communication of diverse stakeholder interests related to the goal of tobacco policies. The findings of this study provide useful strategies and best practices for those looking to employ Tribal-university partnerships as strategies for tobacco control planning and policy-based research.