Community Health Representatives Research Articles

Abstract IA008: Weaving university and community-based partnership

Abstract Introduction/Background Including Hypothesis/Objectives: University investigators affiliated with the Partnership for Native American Cancer Prevention (NACP) and Navajo Nation partners worked together with a goal to estimate the prevalence of Helicobacter pylori infection and its specific subtypes and factors associated with infection. Methods: This partnership required multiple strategies to promote awareness and individual participation in this study. The team started with tribal resolutions and communication network with local Chapter House officers, Community Health Representatives (CHRs), local Navajo translators, Diné Haatalii Association (Navajo Medicine Man), social network outreach, and community healthcare providers. Results: Our population-based study weaved together various networks with local leaders, social media, and the Navajo Healthy Stomach website. Participant follow-up after testing found that local hospitals were overwhelmed with requests for appointments and immediate treatment. Participants reported side-effects of prescribed medications. The Monroy lab revealed enough biopsies to test for Helicobacter pylori infection. Conclusions: Successful studies must utilize both Navajo Nation Human Research and Review Board approvals with university Institutional Review Boards (IRBs). Local, in-person, radio, and social media-based weaving of culturally sensitive communications develops strong partnerships between university and community-based local people, programs, and hospitals. Future Directions (Opportunities and Challenges): The team continues to study the role of Helicobacter pylori on the gastrointestinal microbiome in the development of gastric disease in infected Navajo patients. Further outreach is ongoing with local community and providers. Funding Support: Partnership for Native American Cancer Prevention, U54 NCI grant. Citation Format: Priscilla R. Sanderson, Fernando Monroy, Heidi Brown, Robin Harris. Weaving university and community-based partnership [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr IA008.

Optimizing process flow diagrams to guide implementation of a colorectal cancer screening intervention in new settings

PurposeThe goal of this study was to assess acceptability of using process flow diagrams (or process maps) depicting a previously implemented evidence-based intervention (EBI) to inform the implementation of similar interventions in new settings.MethodsWe developed three different versions of process maps, each visualizing the implementation of the same multicomponent colorectal cancer (CRC) screening EBI in community health centers but including varying levels of detail about how it was implemented. Interviews with community health professionals and practitioners at other sites not affiliated with this intervention were conducted. We assessed their preferences related to the map designs, their potential utility for guiding EBI implementation, and the feasibility of implementing a similar intervention in their local setting given the information available in the process maps.ResultsEleven community health representatives were interviewed. Participants were able to understand how the intervention was implemented and engage in discussions around the feasibility of implementing this type of complex intervention in their local system. Potential uses of the maps for supporting implementation included staff training, role delineation, monitoring and quality control, and adapting the components and implementation activities of the existing intervention.ConclusionProcess maps can potentially support decision-making about the adoption, implementation, and adaptation of existing EBIs in new contexts. Given the complexities involved in deciding whether and how to implement EBIs, these diagrams serve as visual, easily understood tools to inform potential future adopters of the EBI about the activities, resources, and staffing needed for implementation.

Using environmental health dialogue in a Diné-centered approach for individualized results reporting in an environmental exposure study following the Gold King Mine Spill

BackgroundOn August 5, 2015, the Gold King Mine Spill (GKMS) resulted in 3 million gallons of acid mine drainage spilling into the San Juan River impacting the Diné Bikeyah (traditional homelands of the Navajo people). The Gold King Mine Spill Diné Exposure Project was formed to understand the impacts of the GKMS on the Diné (Navajo). Reporting individualized household results in an exposure study is becoming more common; however, materials are often developed with limited community input with knowledge flowing in one direction - from researcher to participant. In this study we examined the development, dissemination, and evaluation of individualized results materials. MethodsIn August 2016, Navajo Nation Community Health Representatives (Navajo CHRs) sampled household water, dust, and soil, and resident blood and urine for lead and arsenic, respectively. From May–July 2017, iterative dialogue with a wide range of community partners and a community focus groups guided the development of a culturally-based dissemination process. In August 2017, Navajo CHRs reported individualized results and they surveyed the participants on the report-back process at that time. ResultsAll of the 63 Diné adults (100%) who participated in the exposure study received their results by a CHR in person and 42 (67%) completed an evaluation. Most of those participants (83%) were satisfied with the result packets. Respondents ranked the individual and overall household results as the most important information they received (69% and 57%, respectively), while information on metals exposures and their health effects were the least helpful. ConclusionsOur project illustrates how a model of environmental health dialogue, defined by iterative, multidirectional communication among Indigenous community members, trusted Indigenous leaders, Indigenous researchers, non-Indigenous researchers, can improve reporting individualized study results. Findings can inform future research to encourage multi-directional environmental health dialogue to craft more culturally responsive and effective dissemination and communication materials.

Community Health Representative Workforce: Integration across systems and teams to address the social determinants of indigenous health and wellbeing.

Tribally employed, Community Health Representatives (CHRs) serving Indigenous and American Indian and Alaskan Native (AIAN) peoples are culturally and linguistically embedded community leaders, with the unique ability to serve as the link and intermediary between community members and systems. Unique to the CHR workforce scope of practice is the expectation for high level integration within the medical and social service care team. This explicit role outlined in the scope of work sets an expectation for both CHR and care teams to deliver integrated patient, family, and systems level care coordination and case management. This paper aims to build from our previous manuscript published in Volume 1 of the special issue Community Health Workers Practice from Recruitment to Integration. In that Volume, we explored through a Community Case Study CHR Managers' perspectives on the challenges and opportunities for full CHR integration into health systems and teams serving AIAN. In this paper, we offer new information about the current CHR and CHR Managers' involvements and perceived level of integration within health care teams and the broader public health systems addressing the social and structural determinants of health. We approach this topic considering the COVID-19 pandemic and how CHRs and CHR Programs were included and not included in tribal pandemic response efforts.

Community Health Representatives as Trusted Sources for Increasing Representation of American Indian Communities in Clinical Research.

Three Tribal CHR programs were engaged to develop and refine culturally centered educational materials and a pre-post survey using a consensus-based decision-making approach. CHRs used these materials in brief education sessions during regular client home visits and community events. At 30 days post CHR intervention, participants (N = 165) demonstrated significantly increased awareness about and ability to enroll in COVID-19 treatment and vaccine trials. Participants also described a significant increase in trust in researchers, decreased perceived barriers related to cost for participation in a clinical trial, and improved belief that participation in a COVID-19 clinical trial for treatment was considered a benefit to American Indian and Alaskan Native people. CHRs as trusted sources of information, coupled with culturally centered education materials designed by CHRs for CHR clients, demonstrated a promising approach to improved awareness of clinical trial research generally and COVID-19 trials specifically among Indigenous and American Indian community members of Arizona.

Community Engagement Alliance (CEAL) Against COVID-19 Disparities: Academic-community partnership to support workforce capacity building among Arizona community health workers.

The COVID-19 pandemic has both highlighted and worsened existing health inequities among communities of color and structurally vulnerable populations. Community Health Workers, inclusive of Community Health Representatives (CHW/Rs) have entered the spotlight as essential to COVID-19 prevention and control. To learn about community experiences and perspectives related to COVID-19 and inform CHW/R workforce capacity building efforts, a series of focus groups were conducted with CHW/Rs throughout Arizona at two time points in 2021. Throughout the data collection and analysis process, researchers and community partners engaged in ongoing and open dialogue about what CHW/Rs on the ground were reporting as priority community concerns, needs, and challenges. Thus, CHW/Rs informed the development of culturally and linguistically relevant health education messages, materials, and training for CHW/Rs. In this community case study, we detail the efforts of partnership between a statewide CHW professional association and an academic research team that facilitated rapid decision-making and knowledge sharing to create community-grounded tools and resources supportive of CHW/R workforce capacity building in the context of the COVID-19 pandemic.

Building Trust and Awareness to Increase AZ Native Nation Participation in COVID-19 Vaccines.

The goal of this study was to establish effective, culturally appropriate strategies to enhance participation of American Indian/Alaska Native (AI/AN) communities in prevention and treatment of COVID-19, including vaccine uptake. Thirteen Community Health Representatives (CHRs) from three Arizona Native nations tailored education materials to each community. CHRs delivered the intervention to over 160 community members and administered a pre-posttest to assess trusted sources of information, knowledge, and self-efficacy and intention regarding COVID-19 vaccines. Based on pre-posttest results, doctors/healthcare providers and CHRs were the most trusted health messengers for COVID-19 information; contacts on social media, the state and federal governments, and mainstream news were among the least trusted. Almost two-thirds of respondents felt the education session was relevant to their community and culture, and more than half reported using the education materials to talk to a family member or friend about getting vaccinated. About 67% trusted the COVID-19 information provided and 74% trusted the CHR providing the information. Culturally and locally relevant COVID-19 vaccine information was welcomed and used by community members to advocate for vaccination. The materials and education provided by CHRs were viewed as helpful and emphasized the trust and influence CHRs have in their communities.

Diné teachings and public health students informing peers and relatives about vaccine education: Providing Diné (Navajo)-centered COVID-19 education materials using student health messengers.

On 9 April 2021, the Centers for Disease Control and Prevention (CDC) reported that only 19. 9% of United States (US) adults were fully vaccinated against COVID-19. In that same week, the Navajo Nation (NN) reported that 37.4% of residents were fully vaccinated, making the NN a leader in the uptake of COVID-19 vaccines. Despite high vaccination rates, vaccine hesitancy exists within the NN. The Diné (Navajo) Teachings and Public Health Students Informing Peers and Relatives about Vaccine Education (RAVE) intervention was designed to utilize trusted health messengers as an effective means to address adults' vaccine concerns and hesitancy. The research team used COVID-19 vaccine materials developed in a previous collaboration with non-Navajo tribal communities and publicly available materials. Diné Traditional Knowledge Holders (TKHs) were interviewed to develop and incorporate Diné-specific information on individual and collective health behaviors into the RAVE materials. These drafted health education materials were presented to NN community health representatives (CHRs) and Diné public health students using a consensus panel approach. NN residents who participated in the intervention completed a 16-element retrospective pretest. The adaptation and tailoring process of materials yielded 4 health education materials. The students recruited 46 adults for health education sessions. These participants then completed the retrospective pretest. Changes in the 16 elements were in the desired direction, although only six were significant: four related to attitudes and two concerned with vaccination intention. Participants were more likely to consider vaccination and to try to get vaccinated after the education session. Trusted messengers and culturally centered materials have been identified as effective means of health behavior education with Native American audiences. RAVE applied these intervention elements by (1) training Diné College public health students to leverage their cultural knowledge and social relationships (cultural and social capital) to recruit vaccine-hesitant adults and provide education; (2) building on previous understanding of Native American communities' vaccine concerns; and (3) integrating Diné perspectives on individual and collective health into the adaptation of materials designed for general audiences; this knowledge was gained from interviews with TKHs.

The Otago Exercise Program compared to falls prevention education in Zuni elders: a randomized controlled trial

BackgroundWhen a Zuni elder sustains a fall-related injury, the closest tribal skilled nursing facility is 100 miles from the Pueblo and no physical therapy services are available. Thus, fall prevention strategies as a primary intervention to avert injurious falls and preserve aging in place are needed. The objective of the study is to compare the effectiveness of a community health representative (CHR)-delivered, culturally-adapted Otago Exercise Program (OEP) fall prevention program compared to the standard of care education-based fall risk management.Methods“Standing Strong in Tribal Communities: Assessing Elder Falls Disparity” is mixed-methods research with a randomized controlled trial. The CHRs will be trained to deliver the culturally-adapted OEP trial and offer advantages of speaking “Shiwi” (Zuni tribal language) and understanding Zuni traditions, family structures, and elders’ preferences for receiving health information. Focus groups will be conducted to assure all materials are culturally appropriate, and adapted. A physical therapist will train CHRs to screen elders for falls risk and to deliver the OEP to the intervention group and education to the control group. Up to 400 Zuni elders will be screened by the CHRs for falls risk and 200 elders will be enrolled into the study (1:1 random allocation by household). The intervention is 6 months with measurements at baseline, 3, 6 and 12 months. The primary outcome is improved strength and balance (timed up and go, sit to stand and 4 stage balance test), secondary outcomes include falls incidence, self-efficacy using Attitudes to Falls-Related Interventions Scale, Medical Outcomes Study Short Form 12 (SF-12v2) and Self-Efficacy for Managing Daily Activities.DiscussionFall prevention for Zuni elders was identified as a tribal priority and this trial is built upon longstanding collaborations between the investigative team, Zuni tribal leaders, and multiple tribal health programs. Delivery by the CHRs make this model more acceptable, and thus, more sustainable long term. This study has the potential to change best practice for elder care in tribal and rural areas with limited access to physical therapist-delivered fall prevention interventions and aligns with tribal goals to avert fall-related injury, reduce healthcare disparity, and preserve elder’s independence.Trial registrationNCT04876729

Lessons from management of syphilis in Nunavut, Canada, 2012-2020.

Nunavut, part of Inuit Nunangat, is a geographically vast territory in northern Canada, with a population of over 38,000 people. Most (85%) of the population identify as Inuit. Nunavut has experienced a significant rise in heterosexual infectious syphilis cases since 2012. Management of communicable diseases, including syphilis, is challenging due to high staff turnover and long delays in specimen transport times. Social determinants of health are also an important contributor. The aim of this study is to describe the epidemiology and program elements for infectious syphilis from 2012-2020 and to highlight beneficial interventions. Syphilis is a notifiable disease in Nunavut with all cases reported to the Territorial Department of Health. Cases were staged by a medical consultant. Data were analyzed and released in public reports as part of the public health program. From 2012 to 2020, 655 infectious syphilis cases were reported, with 53% of reported cases among females. Infection rates were highest in 20 to 39-year-olds. There was significant variability in reported cases over this time period by geographic region, with the majority of infectious cases reported from the Kivalliq region. Despite 48 reported cases in pregnancy, no confirmed congenital syphilis cases were identified. Program staff identified strengths of the response as well as ongoing needs, such as plain language resources available in multiple languages. Despite the logistical challenges with syphilis management in the territory, the overall outcomes have been positive, with no confirmed congenital cases identified. We attribute this to a coordinated effort by multiple partners including key actions by public health nurses and community health representatives.

Community Health Representative Workforce: Meeting the Moment in American Indian Health Equity.

In 2018, the Community Health Representative (CHR) workforce celebrated their 50th year and serve as the oldest and only federally funded Community Health Worker (CHW) workforce in the United States. CHRs are a highly trained, well-established standardized workforce serving the medical and social needs of American Indian communities. Nationally, the CHR workforce consists of ~1,700 CHRs, representing 264 Tribes. Of the 22 Tribes of Arizona, 19 Tribes operate a CHR Program and employ ~250 CHRs, equivalent to ~30% of the total CHW workforce in the state. Since 2015, Tribal CHR Programs of Arizona have come together for annual CHR Policy Summits to dialogue and plan for the unique issues and opportunities facing CHR workforce sustainability and advancement. Overtime, the Policy Summits have resulted in the Arizona CHR Workforce Movement, which advocates for inclusion of CHRs in state and national level dialogue regarding workforce standardization, certification, training, supervision, and financing. This community case study describes the impetus, collaborative process, and selected results of a 2019–2020 multi-phase CHR workforce assessment. Specifically, we highlight CHR core roles and competencies, contributions to the social determinant of health and well-being and the level to which CHRs are integrated within systems and teams. We offer recommendations for strengthening the workforce, increasing awareness of CHR roles and competencies, integrating CHRs within teams and systems, and mechanism for sustainability.

Assessing Knowledge and Perceptions About Cancer Among American Indians of the Zuni Pueblo, NM

American Indians (AIs) in New Mexico have lower cancer screening rates compared to other populations and are more likely to be diagnosed with cancer at an advanced stage of the disease as reported by Li et al. (Archives of Internal Medicine 163(1):49–56, 2003). AIs also have the lowest 5-year cancer survival rates compared to any ethnic/racial group in the USA as reported by Clegg et al. (Arch Intern Med 162:1985–1993, 2002) and Edwards et al. (Cancer 97:1407–1427, 2005). Numerous barriers such as cultural beliefs, fear, fatalism, mistrust, stigma, and lack of culturally appropriate interventions could contribute to low cancer screening rates as reported by Daley et al. (J Health Dispar Res Pract 5(2), 2012); Filippi et al. (J Prim Care Community Health 4(3):160–166, 2013); James et al. (Prev Chronic Dis 10:E170, 2013); and Schumacher et al. (Cancer Causes Control 19(7):725–737, 2008). Trained Community Health Representatives (CHRs) from the Zuni Pueblo and native Zuni undergraduate students led six 1-h focus group sessions using a structured focus group guide with probes. The focus groups were conducted among 51 participants from different age groups (20–29 years, n = 19; 30–49 years, n = 17; and 50 years and older, n = 15) stratified by sex. Focus groups were conducted in both English and Shiwi (Zuni) languages. Sessions were audio recorded, and team members took notes. CHRs transcribed the notes and audio recordings, and created a codebook for qualitative data analysis. In the focus groups, participants provided Zuni-specific cultural context, opinion, and experience regarding (1) general knowledge about cancer, (2) cancer risk, (3) cancer risk reduction, (4) personal experiences with cancer, and (5) culturally competent delivery of cancer information and resources. Understanding the perceptions of cancer within the Zuni Pueblo is an essential component in the development of interventional/preventative measures and improvement of current care. Ultimately, this information will provide a basis for the next steps in culturally sensitive cancer care for the Zuni Pueblo.

Impacts to Diné activities with the San Juan River after the Gold King Mine Spill.

BackgroundOn August 5th, 2015, 3 million gallons of acid mine drainage was accidentally discharged from the Gold King Mine near Silverton, Colorado into Cement Creek which is a tributary of the Animas and San Juan Rivers. The government-initiated risk assessment only assessed a recreational scenario (i.e. hiker drinking from the river), failing to recognize the deep connection of the Diné (Navajo) with the San Juan River.MethodsUtilizing a mixed-methods approach we determined the impacts of the 2015 Gold King Mine Spill (GKMS or Spill) on Diné activities. We developed a questionnaire to collect pre- and post-GKMS Diné activity frequency and duration. Navajo Nation Community Health Representatives administered the questionnaire to 63 Diné adults and 27 children living in three Navajo communities along the River.ResultsThrough analysis of the focus group transcripts we identified 43 unique activities between the Diné and San Juan River. There were significant reductions in the total number, frequency, and duration of livelihood, dietary, recreational, cultural/spiritual and arts and craft activities. On average, Diné activities with the San Juan River following the GKMS decreased by 56.2%.SignificanceThe significant reduction in activities following the GKMS may lead to long-term trauma, impacting the ability of the Diné to pass down teachings to their children affecting future generations to come. The 43 distinct activities between the Diné and the San Juan River highlight the importance for scientists and disaster responders to consider cultural and spiritual impacts when responding to environmental disasters and conducting risk assessments among Indigenous communities.

A SARS-CoV-2 Outbreak Illustrating the Challenges in Limiting the Spread of the Virus - Hopi Tribe, May-June 2020.

On June 3, 2020, a woman aged 73 years (patient A) with symptoms consistent with coronavirus disease 2019 (COVID-19) (1) was evaluated at the emergency department of the Hopi Health Care Center (HHCC, an Indian Health Services facility) and received a positive test result for SARS-CoV-2, the virus that causes COVID-19. The patient's symptoms commenced on May 27, and a sibling (patient B) of the patient experienced symptom onset the following day. On May 23, both patients had driven together and spent time in a retail store in Flagstaff, Arizona. Because of their similar exposures, symptom onset dates, and overlapping close contacts, these patients are referred to as co-index patients. The co-index patients had a total of 58 primary (i.e., direct) and secondary contacts (i.e., contacts of a primary contact); among these, 27 (47%) received positive SARS-CoV-2 test results. Four (15%) of the 27 contacts who became ill were household members of co-index patient B, 14 (52%) had attended family gatherings, one was a child who might have transmitted SARS-CoV-2 to six contacts, and eight (30%) were community members. Findings from the outbreak investigation prompted the HHCC and Hopi Tribe leadership to strengthen community education through community health representatives, public health nurses, and radio campaigns. In communities with similar extended family interaction, emphasizing safe ways to stay in touch, along with wearing a mask, frequent hand washing, and physical distancing might help limit the spread of disease.

Fighting the COVID-19 Merciless Monster: Lives on the Line-Community Health Representatives' Roles in the Pandemic Battle on the Navajo Nation.

Over 100 Community Health Representatives (CHRs) as part of the oldest and largest Community Health Worker (CHW) program in the United States serve the Dine People on the Navajo Nation. The CHRs work under a tribally determined scope of practice that embraces the importance of self-determination of tribal nations, a philosophy central to the CHW field nationally. Navajo CHRs are the epitome of frontline workers, as they extend their traditional role to encompass long-term emergency response during coronavirus disease-2019 (COVID-19). This article describes the Navajo CHR role in the pandemic through the lens of an interview with the program's director, Mae-Gilene Begay.

Community Outreach for Navajo People Living with Diabetes: Who Benefits Most?

IntroductionThe Community Outreach and Patient Empowerment (COPE) intervention provides integrated outreach through community health representatives (CHRs) to people living with diabetes in Navajo Nation. The aim of this study was to identify groups for whom the intervention had the greatest effect on glycated hemoglobin A1c (HbA1c).MethodsWe analyzed de-identified data extracted from routine health records dated from December 1, 2010, through August 31, 2014, to compare net change in HbA1c among COPE patients and non-COPE patients. We used linear mixed models to assess whether the intervention was modified by age, sex, preferred language, having a primary care provider, baseline HbA1c, or having a mental health condition.ResultsAge, having a primary care provider, and baseline HbA1c significantly modified HbA1c levels. Among patients aged 64 or younger, COPE participation was associated with a net decrease in HbA1c of 0.77%; among patients aged 65 or older, the net decrease was 0.49% (P = .03). COPE participation was associated with a steeper decrease in HbA1c among patients without a primary care physician (net decrease, 0.99%) than among patients with a primary care provider (net decrease, 0.57%) (P = .03). COPE patients with a baseline HbA1c >9% had a net decrease of 0.70%, while those with a baseline HbA1c ≤9% had a net decrease of 0.34% (P = .01). We found no significant differences based on sex, preferred language, or having a mental health condition.ConclusionFindings suggest that the COPE intervention was robust and equitable, benefiting all groups living with diabetes in Navajo Nation, but conferring the greatest benefit on the most vulnerable.

Effectiveness of Interventions to Increase Colorectal Cancer Screening Among American Indians and Alaska Natives.

IntroductionScreening rates for colorectal cancer are low in many American Indian and Alaska Native (AI/AN) communities. Direct mailing of a fecal immunochemical test (FIT) kit can address patient and structural barriers to screening. Our objective was to determine if such an evidence-based intervention could increase colorectal cancer screening among AI/AN populations.MethodsWe recruited study participants from 3 tribally operated health care facilities and randomly assigned them to 1 of 3 study groups: 1) usual care, 2) mailing of FIT kits, and 3) mailing of FIT kits plus follow-up outreach by telephone and/or home visit from an American Indian Community Health Representative (CHR).ResultsAmong participants who received usual care, 6.4% returned completed FIT kits. Among participants who were mailed FIT kits without outreach, 16.9% returned the kits — a significant increase over usual care (P < .01). Among participants who received mailed FIT kits plus CHR outreach, 18.8% returned kits, which was also a significant increase over usual care (P < .01) but not a significant increase compared with the mailed FIT kit–only group (P = .44). Of 165 participants who returned FIT kits during the study, 39 (23.6%) had a positive result and were referred for colonoscopy of which 23 (59.0%) completed the colonoscopy. Twelve participants who completed a colonoscopy had polyps, and 1 was diagnosed with colorectal cancer.ConclusionDirect mailing of FIT kits to eligible community members may be a useful, population-based strategy to increase colorectal cancer screening among AI/AN people.

Establishing voluntary certification of community health workers in Arizona: a policy case study of building a unified workforce

BackgroundCommunity health workers (CHWs) are widely recognized as essential to addressing disparities in health care delivery and outcomes in US vulnerable populations. In the state of Arizona, the sustainability of the workforce is threatened by low wages, poor job security, and limited opportunities for training and advancement within the profession. CHW voluntary certification offers an avenue to increase the recognition, compensation, training, and standardization of the workforce. However, passing voluntary certification legislation in an anti-regulatory state such as Arizona posed a major challenge that required a robust advocacy effort.Case presentationIn this article, we describe the process of unifying the two major CHW workforces in Arizona, promotoras de salud in US-Mexico border communities and community health representatives (CHRs) serving American Indian communities. Differences in the origins, financing, and even language of the population-served contributed to historically divergent interests between CHRs and promotoras. In order to move forward as a collective workforce, it was imperative to integrate the perspectives of CHRs, who have a regular funding stream and work closely through the Indian Health Services, with those of promotoras, who are more likely to be grant-funded in community-based efforts. As a unified workforce, CHWs were better positioned to gain advocacy support from key health care providers and health insurance companies with policy influence. We seek to elucidate the lessons learned in our process that may be relevant to CHWs representing diverse communities across the US and internationally.ConclusionsLegislated voluntary certification provides a pathway for further professionalization of the CHW workforce by establishing a standard definition and set of core competencies. Voluntary certification also provides guidance to organizations in developing appropriate training and job activities, as well as ongoing professional development opportunities. In developing certification with CHWs representing different populations, and in particular Tribal Nations, it is essential to assure that the CHW definition is in alignment with all groups and that the scope of practice reflects CHW roles in both clinic and community-based settings. The Arizona experience underscores the benefits of a flexible approach that leverages existing strengths in organizations and the population served.

Abstract B044: Assessing knowledge and perceptions about cancer among American Indians of Zuni Pueblo, New Mexico

Abstract New Mexico is one of the most geographically and culturally diverse states and faces serious cancer health disparities among its poor, rural, and ethnically diverse populations of American Indians (AIs). They have lower cancer screening rates compared to other populations and are more likely to be diagnosed with a later stage of cancer but less likely to receive treatment (Li et al, 2003). In turn, AIs have the lowest five-year cancer survival rates compared to any ethnic/racial group in the US (Clegg, 2002; Edwards, 2005). Numerous barriers such as cultural beliefs in health and health care, fear, fatalism, mistrust, stigma and lack of culturally appropriate interventions contribute to low cancer screening rates and low cancer survivorship (Daley et al, 2012; Filippi et al, 2013; James et al, 2013). Zuni Health Initiative conducted a community-based participatory research project in collaborations with community stakeholders from the Zuni Pueblo to assess knowledge and perceptions about common cancers among Zuni adults. We used trained Community Health Representatives (CHRs) from Zuni along with Zuni undergraduate students who led six one-hour focus group sessions using structured questionnaire with probes designed to illicit information on knowledge and perceptions about cancer among Zuni adults. The focus groups were conducted among 51 participants from different age groups (20-29 yrs, n=19; 30-49 yrs, n=17; and 50 yrs and older, n=15) stratified by gender. Focus groups were conducted in English and Shiwi language and were audio recorded, with the Zuni students maintaining extensive notes on the focus group discussions. The Zuni CHRs transcribed the audio recordings, and developed a codebook based on the transcriptions and notes for the qualitative data analysis. Overall, the responses given by participants fell into three distinct categories including, (1) a general lack of knowledge, (2) the perception that the disease is uncontrollable in nature, and (3) general negative connotations. Although some participants acknowledged that cancer could come in many forms, there were many participants who were uncertain about the different factors that contribute to the disease, as well as specific outcomes associated with the disease. Many participants mentioned cancer being uncontrollable in nature, that cancer always comes back, and expressed that death is the inevitable outcome. Finally, several participants displayed general uncertainty and discomfort when discussing cancer. There was negative connotations when participants heard the word “cancer”, as well as construed negative implications about discussing personal experiences with cancer. Findings from this formative study provides evidence that can guide the development and testing of interventions aimed at enhancing knowledge about cancer and cancer-specific screening practices. Citation Format: Safia Safi, Donica Ghahate, Jeanette Bobelu, Angela Wandinger-Ness, Thomas Faber, Shiraz Mishra, Cheryl Willman, Vallabh (Raj) Shah. Assessing knowledge and perceptions about cancer among American Indians of Zuni Pueblo, New Mexico [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr B044.

Community-based outreach associated with increased health utilization among Navajo individuals living with diabetes: a matched cohort study

BackgroundNavajo community members face high rates of diabetes mellitus and other chronic diseases. The Navajo Community Health Representative Outreach Program collaborated with healthcare providers and academic partners to implement structured and coordinated outreach to patients living with diabetes. The intervention, called Community Outreach and Patient Empowerment or COPE, provides home-based health coaching and community-clinic linkages to promote self-management and engagement in healthcare services among patients living with diabetes. The purpose of this study was to evaluate how outreach by Navajo Community Health Representatives (“COPE Program”) affected utilization of health care services among patients living with diabetes.MethodsDe-identified data from 2010 to 2014 were abstracted from electronic health records at participating health facilities. In this observational cohort study, 173 cases were matched to 2880 controls. Healthcare utilization was measured as the number of times per quarter services were accessed by the patient. Changes in utilization over 4 years were modeled using a difference-in-differences approach, comparing the trajectory of COPE patients’ utilization before versus after enrollment with that of the control group. The model was estimated using generalized linear mixed models for count outcomes, controlling for clustering at the patient level and the service unit level.ResultsCOPE enrollees showed a 2.5% per patient per quarter (pppq) greater increase in total utilization (p = 0.001) of healthcare services than non-COPE enrollees; a 3.2% greater increase in primary care visits (p = 0.024); a 6.3% greater increase in utilization of counseling and behavioral health services (p = 0.013); and a 9.0% greater increase in pharmacy visits (p < 0.001). We found no statistically significant differences in utilization trends of inpatient, emergency room, specialty outpatient, dental, laboratory, radiology, or community encounter services among COPE participants versus control.ConclusionsA structured intervention consisting of Community Health Representative outreach and coordination with clinic-based providers was associated with a modest increase in health care utilization, including primary care and counseling services, among Navajo patients living with diabetes. Community health workers may provide an important linkage to enable patients to access and engage in clinic-based health care.Trial registrationNCT03326206, registered 10/31/2017, retrospectively registered.