Using action research and a community-academic partnership to understand clinical trial participation: a patient-centered perspective.

BACKGROUND: Clinical trials that are patient-centered appear to be more successful (e.g., clinical outcomes, improved communication, mutual empowerment, changed attitudes), thus, action research may be a field of importance. The current study explores the Formation and Execution of Activities phases of a community-academic partnership (CAP). METHODS: Members consisted of industry stakeholders, a healthcare/academic institution, and patients/families with lived experiences as cancer survivors and/or caregivers. Retrospectively, CAP members described the facilitating and/or hindering factors present in the partnership development. A document review process was used. Field notes from three CAP meetings, which focused on understanding clinical trial participation, were analyzed using a thematic approach. RESULTS: Seven facilitating and three hindering factors were present. Interpersonal (vs. operational) processes were referenced as influential facilitating factors more often. Themes that emerged included 'trials as a treatment option', 'leaving a legacy', and 'timing is critical.' CONCLUSION: This study provides a patient-centered perspective on barriers/challenges of clinical trial participation and how to improve future perceptions.

Clinical trials are more successful when patients are engaged, and their perspectives have been considered in the study design. Community-academic partnerships (CAPs) are one way to ensure patients are more engaged in the research process by creating a collaboration where all parties involved play an equitable role. We provide an example of a CAP with an industry stakeholder, a healthcare/academic institution, and patients as well as families with lived experiences as cancer survivors and/or caregivers. Described here two phases of the CAP: the Formation and the Execution of Activities phases. The Formation phase covers the collaboration process and development of the CAP. In our study, to better understand this phase, CAP members described what did and did not go well during the partnership development. We found more aspects went well than did not and that processes related to the quality of the relationship and communication among CAP members were important. The Execution of Activities phase focuses on how the CAP is working towards an agreed upon outcome. In our study, to better understand this phase, we reviewed notes taken at previous CAP meetings that focused on exploring participation in clinical trials as a treatment option. We found that when it comes to participation in clinical trials, patients and/or caregivers with lived experiences with cancer, felt that timing of this treatment option was important and that reasons for participation included wanting to leave a legacy. In this paper we describe some challenges of clinical trial participation, identified by patients and caregivers, and discuss how to improve views of clinical trial participation in the future.

Community-Academic Partnership to Assess the Role of Physical Disinvestment on Firearm Violence in Toledo, OH.

Reversing physical disinvestment, e.g., by remediating abandoned buildings and vacant lots, is an evidence-based strategy to reduce urban firearm violence. However, adoption of this strategy has been inconsistent across US cities. Our community-academic partnership sought to support adoption in Toledo, OH, USA, by generating locally relevant analyses on physical disinvestment and firearm violence. We used a spatial case-control design with matching. Physical disinvestment measures were derived from a citywide parcel foot audit conducted by the Lucas County Land Bank in summer 2021. Firearm violence outcomes were incident-level shootings data from the Toledo Police Department from October 2021 through February 2023. Shooting locations were matched to controls 1:4 on poverty rate, roadway characteristics, and zoning type. Exposures were calculated by aggregating parcels within 5-min walking buffers of each case and control point. We tested multiple disinvestment measures, including a composite index. Models were logistic regressions that adjusted for the matching variables and for potential spatial autocorrelation. Our sample included N = 281 shooting locations and N = 1124 matched controls. A 1-unit increase in the disinvestment score, equal to approximately 1 additional disrepair condition for the average parcel within the walking buffer, was associated with 1.68 times (95% CI: 1.36, 2.07) higher odds of shooting incidence. Across all other measures, greater disinvestment was associated with higher odds of shooting incidence. Our finding of a strong association between physical disinvestment and firearm violence in Toledo can inform local action. Community-academic partnership could help increase adoption of violence prevention strategies focused on reversing physical disinvestment.

The Chickahominy T.R.U.T.H. (Trust, Research, Understand, Teach, and Heal) Project-A Tribal Community-Academic Partnership for Understanding the Impact of Structural Factors on Perceived Cancer Risk in Rural Virginia.

In 2022, the Virginia Chickahominy Indian Tribe partnered with Virginia Commonwealth University Massey Comprehensive Cancer Center to investigate concerns about a potential cancer cluster near a local landfill. While investigating cancer clusters is complex due to long latency and multifactorial causes, the community's concerns about structural factors driving cancer risk warrant exploration. Thus, the Chickahominy T.R.U.T.H. (Trust, Research, Understand, Teach, and Heal) Project was created as a community-academic partnership to (1) identify structural factors and barriers associated with perceived cancer risk and care; (2) assess cancer knowledge, care access gaps, and perceived risks, including testing private and community water sources; (3) develop and deploy culturally tailored cancer education and resource navigation, including groundwater safety education, policies, and remediation. We will conduct 150 in-person interviews and water tests among residents within a four-mile radius of the landfill, and deploy 1000 structured questionnaires among Charles City County residents. In this paper, we provide an overview of the ongoing project design, development, and progress in support of the project's objectives. This collaborative investigation aims to address cancer health disparities, enhance research and health policy advocacy, and honor the sacred knowledge of an underserved community, laying the groundwork for a long-term partnership to guide future research questions.

A qualitative study of childhood cancer families' post-treatment needs and the impact of a community-based organization in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.

BACKGROUND: Individual- and population-level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non-English language preference. PROCEDURE: We partnered with a community-based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English- and Spanish-speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post-treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners. RESULTS: Twelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non-English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min-max) age 20 (16-32) and 9 (5-19) years post diagnosis; parents (nine female, two male) were age 48 (40-60) and 14 (6-23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent-AYA-clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety-net, fostering community, and facilitating H/L families' communication. CONCLUSIONS: Childhood cancer has long-lasting effects on families, and those with non-English language preference face additional burdens. Community-based support buffers some of the negative effects of childhood cancer and may reduce disparities.

Promoting Latinx health equity through community-engaged policy and practice reforms in North Carolina.

Introduction: The Latinx Advocacy Team & Interdisciplinary Network for COVID-19 (LATIN-19) is a unique multi-sector coalition formed early in the COVID-19 pandemic to address the multi-level health inequities faced by Latinx communities in North Carolina. Methods: We utilized the National Institute on Minority Health and Health Disparities (NIMHD) Research Framework to conduct a directed content analysis of 58 LATIN-19 meeting minutes from April 2020 through October 2021. Application of the NIMHD Research Framework facilitated a comprehensive assessment of complex and multidimensional barriers and interventions contributing to Latinx health while centering on community voices and perspectives. Results: Community interventions focused on reducing language barriers and increasing community-level access to social supports while policy interventions focused on increasing services to slow the spread of COVID-19. Discussion: Our study adds to the literature by identifying community-based strategies to ensure the power of communities is accounted for in policy reforms that affect Latinx health outcomes across the U.S. Multisector coalitions, such as LATIN-19, can enable the improved understanding of underlying barriers and embed community priorities into policy solutions to address health inequities.

The Center for Indigenous Innovation and Health Equity: The Osage Nation's Mobile Market.

Over the last decade, the Osage Nation has actively worked to build Tribal food sovereignty within the reservation where rates of chronic disease and food insecurity are higher than the United States general population. In 2013, the Nation repurposed land toward the development of a Tribal farm with the aim of providing healthy foods to Osage citizens. Produce from the farm is distributed to elders groups, at Tribal Head Starts and schools, and to support the tribal food distribution program. These efforts have led to improved vegetable intake among Osage children, contributing to improved food security, but there is concern that tribal members who live in more remote areas of the Nation or have transportation or mobility issues are not able to access farm production. In partnership with the Center for Indigenous Health Equity (CIIHE), Osage Nation engaged in a community-based participatory research study to assess reservation areas with the greatest barriers to healthy foods and to identify community priorities for intervention. Guided by the principles of food sovereignty, which assert that intervention efforts must address the underlying structural issues of inequality, Osage has designed a mobile market initiative to expand the reach of the Harvest Land farm and deliver healthy, tribally produced meats, herbs, and fresh vegetables to areas with the highest rates of food insecurity. We describe the participatory research efforts and evaluation strategies that center Osage priorities for food security and food sovereignty.

The Choctaw Nation's Growing Hope Program.

The Choctaw Nation of Oklahoma's Historic Preservation Department (HPD) and the Center for Indigenous Health Equity (CIIHE) are partnering to implement and evaluate food sovereignty interventions to better understand the potential impact of such programs on individual and community health. The HPD's Growing Hope Program is a food sovereignty initiative that aims to restore traditional Choctaw gardens, which were once a physical, social, and cultural center of Choctaw life. The program combines heirloom seeds and the stories of their origins, gardening education and technical assistance, cooking classes, and a Choctaw youth internship program to support intergenerational knowledge and the restoration of culture and food security. Since its inception the program has provided Choctaw families with ancestral Choctaw cultivar seeds and provided the technical assistance to support the growing of sustainable, healthy, traditional Choctaw foods.

Enhancing Indigenous Food Sovereignty and Community Health Through the Karuk Agroecosystem Resilience Initiative: We Are Caring for It: xúus nu'éethti.

Indigenous communities in the United States experience some of the highest rates of food insecurity and diet-related diseases despite an abundance of food assistance programs and other public health interventions. New approaches that center Indigenous perspectives and solutions are emerging and urgently needed to better understand and address these challenges. This Practice Note shares lessons learned from ongoing collaboration between the Karuk Tribe and University of California, Berkeley researchers and other partners to assess and enhance food sovereignty among Tribes and Tribal communities in the Klamath River Basin. Through two participatory research and extension projects, we demonstrate the importance of centering Indigenous knowledge to strengthen research findings and identify more culturally appropriate solutions to community identified food access, health, and ecosystem challenges. Key findings suggest that approaches to food sovereignty and community health must emanate from the community, be approached holistically, reflect community values and priorities, and center Indigenous land stewardship.

Food Security and Food Sovereignty: The Difference Between Surviving and Thriving.

Previous research in American Indian and Alaska Native (AI/AN) communities has documented high prevalence of food insecurity. Yet many AI/AN scholars and communities have expressed concerns that the dominant societal conceptions of food security are not reflective of the teachings, priorities, and values of AI/AN communities. Food security initiatives often focus on access to food and, at times, nutrition but little consideration is given to cultural foods, the spirituality carried through foods, and whether the food was stewarded in a way that promotes well-being not just for humans but also for plants, animals, land, and water. Despite the concerns of AI/AN communities that their needs are not centered in dominant societal food conceptualizations and food security programming, the food sovereignty efforts of AI/AN communities have captured national attention as a solution to modern food system inequities. Indigenous Food Sovereignty (IFS) is a holistic approach to food that incorporates values of relationality, reciprocity, and relationships. Fundamental differences exist between food security and food sovereignty, yet dominant society often reduces IFS as a solution to food security, rather than an entirely different food system that is predicated on values that contrast with that of dominant society. Despite calls to decolonize the definition and measurement of food security, we explore whether fixing the concept of food security is a worthy endeavor or whether efforts would be better spent supporting the resurgence and revitalization of AI/AN food values, food knowledge, and community food sovereignty initiatives.

Supporting Traditional Foodways Knowledge and Practices in Alaska Native Communities: The Elders Mentoring Elders Camp.

The transmission of generational knowledge in Alaska Native communities has been disrupted by colonization and led to declining health among Alaska Natives, as evidenced by the loss of knowledge regarding traditional foods and foodways and increasing rates of cardiometabolic disorders impacting Alaska Natives. Elders play a central role in passing down this generational knowledge, but emerging Elders may have difficulty in stepping into their roles as Elders due to the rapid social and cultural changes impacting their communities. The Center for Alaska Native Health Research (CANHR) and the Denakkanaaga Elders Program are partnering with the Center for Indigenous Innovation and Health Equity to uplift and support traditional food knowledge and practices to promote health in Alaska Native communities. Guided by a decolonizing and Indigenizing framework, researchers at CANHR are working with Athabascan Elders in the Interior of Alaska to strengthen and protect the intergenerational transmission of cultural knowledge and practices for emerging Elders. This community-academic partnership will implement and evaluate an Elders Mentoring Elders Camp to focus on repairing and nurturing relationships through the practice and preservation of cultural knowledge and practices, including traditional foodways. This initiative contributes to the intergenerational transmission of knowledge, which is necessary to keep culture alive and thriving.

The Development of a Community-Led Alaska Native Traditional Foods Gathering.

Traditional foods and foodways are a critical part of health and well-being for Alaska Native/American Indian (ANAI) peoples. However, many of these foods are being replaced by ultra-processed foods high in fat, sugar, and sodium. The cultural knowledge needed to gather, hunt, and fish to acquire these foods is not being passed down to younger generations, due to lingering effects of colonialism, leading to poor health outcomes among ANAI peoples. Southcentral Foundation (SCF) and the Center for Indigenous and Health Equity (CIIHE) are using community-based participatory research to identify and prioritize food sovereignty interventions to strengthen the transmission of cultural knowledge across generations and improve ANAI health. Through the implementation of a comprehensive landscape analysis and the development of a community advisory board, SCF has planned an Alaska Native Traditional Foods Gathering to highlight regional efforts to document, revitalize, and share cultural food knowledge and practices to build healthy communities.

Growing Kalo (Taro) in the Continental United States.

As an increasing number of Native Hawaiian and Pacific Islander adults move to the continental United States, the development and implementation of resources that promote access to cultural foods and support food sovereignty on the continent is crucial to perpetuate cultural practice and connection to the 'aina (land that feeds). Kalo (taro) is an important cultural food central to Native Hawaiian identity. Native Hawaiians connect their genealogy as far back to the cultivation of kalo and the creation of kalo itself. In this practice note, we describe the creation of a mala kalo (cultivated field for taro) in Oregon by the Ka'aha Lahui O 'Olekona Hawaiian Civic Club. An ongoing project over the past 3 years, the creation of a mala kalo exceeded expectations. Not only did the mala allow the cultivation of kalo outside of Hawaii, the mala became a place for the community to unite toward common goals of connecting with the land, promoting mental health, and creating a sense of place in their diaspora. This project indicates that not only is the creation of mala kalo in Oregon feasible, it may also be an important opportunity for the growing number of Native Hawaiians and Pacific Islanders adults living on the continent to improve health outcomes through connections with cultural foods and practices.

Food Systems, Food Sovereignty, and Health: Conference Shares Linkages to Support Indigenous Community Health.

The Center for Indigenous Innovation and Health Equity (CIIHE) at Oklahoma State University Center for Health Sciences (OSU-CHS) is a community-academic partnership with Indigenous peoples from Alaska, Hawai'i, and Oklahoma. The CIIHE supports communities to strengthen traditional food practices and food sovereignty and evaluate the impact of those efforts on health. In February 2022, the CIIHE sponsored and hosted a virtual conference to better understand how food sovereignty initiatives can improve health. More than 600 participants gathered to hear the latest research and practice in the areas of public health and agriculture, nutrition, community-based and Indigenous knowledge, and health economics. Community-led food sovereignty initiatives being implemented as part of the CIIHE were featured along with other Indigenous initiatives in urban, rural, and reservation communities. A survey was administered to conference participants to assess food sovereignty topics and priorities for future research. In this Practice Note, we describe innovative community-led initiatives presented as part of the conference and recommendations for action emerging from qualitative and quantitative data collected from conference participants.

Community-academic partnerships to embrace and ensure diversity, equity, and inclusion in translational science: Evidence of successful community engagement.

Community-Research Advisory Councils (C-RAC) provide a unique mechanism for building sustainable community-academic partnership, fostering bidirectional understanding of complex research issues, disseminating timely research findings, and thereby improving public trust in science. Created in 2009, the Johns Hopkins C-RAC has a mission to achieve diversity, equity, and inclusion (DEI) of stakeholders across the entire research continuum. It has nurtured over a decade of partnership among community and academic stakeholders toward addressing health disparity, health equity, structural racism, and discrimination. Evidence of successful strategies to ensure DEI in partnership and lessons learned are illustrated in this special communication.

Filling the gaps: A community case study in using an interprofessional approach and community-academic partnerships to address COVID-19-related inequities.

Public health challenges rapidly escalated during the COVID-19 pandemic. In response to a severe lack of resources and support in the near western suburbs of Chicago, the COVID Equity Response Collaborative: Loyola (CERCL) was established by an interprofessional team of Loyola University Chicago students, staff, and faculty. CERCL sought to minimize the negative impact of COVID-19 on vulnerable communities, those that are largely Black, Hispanic, or low-income. From April 2020 to the present, the collaborative utilized community-academic partnerships and interdisciplinary collaborations to conduct programming. CERCL's programming included free community-based testing, screening for and assistance with social determinants of health, dissemination of relevant and reliable COVID-related information, provision of personal protective equipment, and facilitation of access to vaccines. With partners, the collaborative conducted 1,500 COVID-19 tests, trained 80 individuals in contact tracing, provided over 100 individuals with specifically tailored resources to address social and legal needs, distributed 5,000 resource bags, held 20 community conversations, canvassed 3,735 homes, and hosted 19 vaccine clinics. Community-academic partnerships with the health system, community and governmental agencies, and the local public health department have been critical to CERCL efforts. The interdisciplinary and interprofessional successes demonstrated in this case study lends the example of a relevant, sustainable, and practical intervention to address nuanced public health issues.

Improving older adults' telehealth through a novel community-academic partnership: Preliminary data.

BACKGROUND: The COVID-19 pandemic increased the use of telehealth, which posed unique challenges for the provision of care to older adults who face numerous barriers to accessing and using technology. To improve older adults' online health-related abilities, the UCSF Geriatrics Workforce Enhancement Program (UCSF-GWEP) partnered with Little Brothers Friends of the Elderly-San Francisco (LBFE-SF) to develop a model telehealth training intervention. METHODS: LBFE-SF recruited older adults from their members with wi-fi and paired each one with a new device and volunteer trainer to cover seven lessons and four key tasks (emailing providers, video visits, accessing health information, and using patient portals). Older adults completed surveys to self-assess their skill level after training, and their confidence before, immediately after, and 3 months post training. A subset of trainees were also interviewed about their program goals and experiences. UCSF-GWEP conducted statistical analyses of survey data, and coded interview transcripts to identify aspects of the model supportive to learning and success. RESULTS: Of 43 participants, 31 completed training. Their median age was 75; 48% were non-white; 45% had no more than a high school education; and 63% reported yearly income below U.S. $20,000. Three months after completing the program, more than 50% of trainees reported that they needed little or no help performing all four key tasks, and confidence with video visits, online searches, and patient portals showed significant improvement. Additionally, in interviews participants reported improved health, social benefits, and explained that learning was facilitated by self-pacing, repetition, and longitudinal support from volunteer trainers. CONCLUSIONS: Older adults with various barriers to learning technology showed online independence and increased confidence with some telehealth tasks after a novel training intervention. Key characteristics of the model included a tablet device, one-on-one longitudinal support from volunteers, comprehensive learning materials, and community-academic partnership.

Building a Community-Academic Partnership to Expand Workforce Development in Underserved, High-Need/High-Demand Areas.

This case study highlights the partnership development between a large, urban, public, community-based behavioral health system and an academic program. Using principles of partnership building and facilitators that enhance partnership building, we describe the process of initiating, building, and sustaining the partnership. The Health Resources and Services Administration (HRSA) workforce development initiative was the primary catalyst for the partnership development. The public, community-based behavioral health system is located in an urban, medically underserved area and health care professional shortage area. The academic partner is a master in social work (MSW) program in Michigan. We assessed partnership development by using process and outcome measures that captured changes in the partnerships and in implementation of the HRSA workforce development grant. The goals of this partnership were to develop the infrastructure to support the training of MSW students, expand workforce skills in integrated behavioral health, and increase the number of MSW graduates who work with medically underserved populations. During 2018-2020, the partnership trained 70 field instructors, engaged 114 MSW students in HRSA field placements, and developed 35 community-based field sites (including 4 federally qualified health centers). The partnership provided training for field supervisors and for HRSA MSW students and developed new courses/trainings focusing on integrated behavioral health assessment/intervention practices, trauma-informed care, cultural awareness, and telebehavioral health practices. Of 57 HRSA MSW graduates who responded to a postgraduation survey, 38 (66.7%) were employed in medically underserved, high-need/high-demand urban areas. Partnership sustainability was helped by formal agreements, regular communication, and a collaborative decision-making approach.

Addressing health disparities of individuals experiencing homelessness in the U.S. with community institutional partnerships: An integrative review.

AIMS: To examine existing community-institutional partnerships providing health care services to people experiencing homelessness by addressing social determinants of health (SDOH) at multiple socioecological levels. DESIGN: Integrative review. DATA SOURCES: PubMed (Public/Publisher MEDLINE), CINAHL (The Cumulative Index of Nursing and Allied Health Literature database), and EMBASE (Excerpta Medica database) were searched to identify articles on health care services, partnerships, and transitional housing. REVIEW METHODS: Database search used the following keywords: Public-private sector partnerships, community-institutional relation, community-academic, academic community, community university, university community, housing, emergency shelter, homeless persons, shelter, and transitional housing. Articles published until November 2021 were eligible for inclusion. The Johns Hopkins Nursing Evidence-Based Practice Quality Guide was used to appraise the quality of articles included in the review by two researchers. RESULTS: Seventeen total articles were included in the review. The types of partnerships discussed in the articles included academic-community partnerships (n = 12) and hospital-community partnerships (n = 5). Health services were also provided by different kinds of health care providers, including nursing and medical students, nurses, physicians, social workers, psychiatrists, nutritionists, and pharmacists. Health care services spanning from preventative care services to acute and specialized care services and health education were also made possible through community-institutional partnerships. CONCLUSION: There is a need for more studies on partnerships that aim to improve the health of homeless populations by addressing social determinants of health at multiple socioecological levels of individuals who experience homelessness. Existing studies do not utilize elaborate evaluation methods to determine partnership efficacy. IMPACT: Findings from this review highlight gaps in the current understanding of partnerships that seek to increase access to care services for people who experience homelessness. NO PATIENT OR PUBLIC CONTRIBUTION: The results of the systematic review were solely from the articles reviewed and do not include information from patients, service users, caregivers, or members of the public.

Building a community-academic partnership to improve screening for intimate partner violence: Integrating advocates in healthcare clinic settings.

AIMS: To develop an innovative community-academic partnership to advance, test and promote intimate partner violence screening and referral protocols by comparing the effect of integrating intimate partner violence advocates versus enhancing medical training in medical clinic settings serving women from vulnerable populations. Detecting intimate partner violence in healthcare settings allows for survivors to connect to safety and referral resources prior to violence escalating. Screening for intimate partner violence and connecting patients to referral resources requires creating a safe and trusting relationship between healthcare providers and patients. Developing screening and referral protocols responsive to survivors' needs requires involvement of clinic staff, survivors and community agencies that support survivors. DESIGN: Three phases of the project include Discovery, Implementation and Dissemination. Mixed-methodology will help in understanding current practices and effects of interventions. METHODS: Actions included in each phase: Discovery: 1) nurse-led focus groups of clinic staff, providers and survivors to understand current clinic practices; 2) retrospective chart review of the number of screens performed, positive screens detected and interventions performed. IMPLEMENTATION: 1) randomization of patients to be interviewed by a trained advocate or by healthcare provider with enhanced training; and 2) assess the number of screenings and referrals performed in each arm and 3) evaluate outcomes of intervention. Dissemination through: presentations, manuscripts and policy recommendations at the institutional and regional level. This IRB-approved proposal was funded in July 2021 by an Advancing a Healthier Wisconsin grant. DISCUSSION: The partnership has improved channels of communication and understanding between diverse clinical care providers, survivors and community agency staff as they navigate the complex challenges to the development and integration of screening and referral protocols. IMPACT: This project will provide evidence of the most effective intimate partner violence screening and referral methodology that can be utilized in a wide variety of medical settings.