Dataset Information

Linking the Cherokee Nation Cancer Registry With Electronic Medical Records: A Tribal-Academic Center Partnership.

ABSTRACT: The Cherokee Nation Cancer Registry (CNCR) is the only tribally operated Surveillance, Epidemiology, and End Results program registry. As registries, including the CNCR, lack detailed data characterizing health behavior or comorbidity, we aimed to enrich the CNCR by linking it with Cherokee Nation's electronic medical record (EMR). We describe the process of a tribal-academic partnership and linking records between the CNCR and the EMR for American Indian people diagnosed with cancer from 2015 to 2020. Prior to data linkage, our team worked with the Cherokee Nation Governance Board and Institutional Review Board to ensure tribal data sovereignty was maintained. While not all persons in the CNCR receive health care at Cherokee Nation, 63% linked with an EMR. We observed differences (P < .001) between cancer site, year at diagnosis, age at diagnosis, and gender by EMR linkage status. Once we further validate linkages and assess data completeness, we will evaluate relationships between behavioral risk factors, comorbidities, and cancer outcomes.

SUBMITTER: Janitz AE

PROVIDER: S-EPMC9142483 | biostudies-literature | 2022 Jul-Aug 01

REPOSITORIES: biostudies-literature

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Linking the Cherokee Nation Cancer Registry With Electronic Medical Records: A Tribal-Academic Center Partnership.

Janitz Amanda E AE Martinez Sydney A SA Campbell Janis E JE Williams Mary L ML Buckskin Stefanie S Armstrong Christopher C Wickliffe Travis T Anderson Amber S AS Doescher Mark P MP Khan Sohail S

Journal of public health management and practice : JPHMP 20220201 4

The Cherokee Nation Cancer Registry (CNCR) is the only tribally operated Surveillance, Epidemiology, and End Results program registry. As registries, including the CNCR, lack detailed data characterizing health behavior or comorbidity, we aimed to enrich the CNCR by linking it with Cherokee Nation's electronic medical record (EMR). We describe the process of a tribal-academic partnership and linking records between the CNCR and the EMR for American Indian people diagnosed with cancer from 2015 t ...[more]

PMID: 35121712

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Project description:IntroductionObservational studies of COVID-19 vaccines' effectiveness can provide crucial information regarding the strength and durability of protection against SARS-CoV-2 infection and whether the protective response varies across different patient subpopulations and in the context of different SARS-CoV-2 variants.MethodsWe used a test-negative study design to assess vaccine effectiveness against SARS-CoV-2 infection and severe COVID-19 resulting in hospitalization, intensive care unit admission, or death using electronic health records data of 170,741 adults who had been tested for COVID-19 at the University of Michigan Medical Center between January 1 and December 31, 2021. We estimated vaccine effectiveness by comparing the odds of vaccination between cases and controls during each 2021 calendar quarter and stratified all outcomes by vaccine type, patient demographic and clinical characteristics, and booster status.ResultsUnvaccinated individuals had more than double the rate of infections (12.1% vs 4.7%) and >3 times the rate of severe COVID-19 outcomes (1.4% vs 0.4%) than vaccinated individuals. COVID-19 vaccines were 62.1% (95% CI=60.3, 63.8) effective against a new infection, with protection waning in the last 2 quarters of 2021. The vaccine effectiveness against severe disease overall was 73.7% (95% CI=69.6, 77.3) and remained high throughout 2021. Data from the last quarter of 2021 indicated that adding a booster dose augmented effectiveness against infection up to 87.3% (95% CI=85.0, 89.2) and against severe outcomes up to 94.0% (95% CI=89.5, 96.6). Pfizer-BioNTech and Moderna vaccines showed comparable performance when controlling for vaccination timing. Vaccine effectiveness was greater in more socioeconomically affluent areas and among healthcare workers; otherwise, we did not detect any significant modification of vaccine effectiveness by covariates, including gender, race, and SES.ConclusionsCOVID-19 vaccines were highly protective against infection and severe COVID-19 resulting in hospitalization, intensive care unit admission, or death. Administration of a booster dose significantly increased vaccine effectiveness against both outcomes. Ongoing surveillance is required to assess the durability of these findings.

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Project description:IntroductionStructural forces that drive health inequalities are magnified in crises. This was especially true during the COVID-19 pandemic, and minority communities were particularly affected. The University of California San Francisco and Health, Equity, Action, Leadership Initiative jointly sent volunteer teams of nurses and doctors to work in the Navajo Nation during the COVID-19 pandemic. This presented an opportunity to explore how academic medical centers (AMCs) could effectively partner with vulnerable communities to provide support during healthcare crises. Therefore, the aims of this study were to describe volunteers' perspectives of academic-community partnerships by exploring their personal, professional and societal insights and lessons learned based on their time in the Navajo Nation during COVID-19.MethodsWe recruited key informants using purposeful sampling of physicians and nurses who volunteered to go to the Navajo Nation during the spring 2020 COVID-19 surge, as well as hospital administrators and leaders involved in organizing the COVID-19 efforts. We used in-depth qualitative interviews to explore key informants' experiences pre-departure, during their stay, and after their return, as well as perspectives of the partnership between an AMC and the Navajo Nation. We used thematic analysis to systematically identify, analyze and report patterns (themes) within the data.ResultsIn total, 37 clinicians and hospital administrators were interviewed including 14 physicians, 16 nurses, and 7 health system leaders. Overall, we found 4 main themes each with several subthemes that defined the partnership between the AMC and the Navajo Nation. Mission and values incorporated civic duty, community engagement, leadership commitment and employee dedication. Solidarity, trust and humility encompassed pre-existing trust, workforce sustainability, humility and erasure of 'savior narratives.' Coordination included logistical coordination, flexibility, selectivity of who and what traveled to the response and coordination around media response. Workforce preparation and support encompassed understanding of historical context and providing healthcare in limited settings, dangers of inadequate preparation and the need for emotional support.ConclusionThis study provides guidelines which AMCs might use to develop and improve partnerships they have or would like to develop with vulnerable communities. These guidelines may even be broadly applied to partnerships outside of a pandemic response. Importantly, such partnerships need to be built with trust and with an eye towards sustainability and long-term relationships as opposed to 'medical missions'.

Dataset Information

Linking the Cherokee Nation Cancer Registry With Electronic Medical Records: A Tribal-Academic Center Partnership.

Publications

Linking the Cherokee Nation Cancer Registry With Electronic Medical Records: A Tribal-Academic Center Partnership.

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