A Survivorship Educational Tool for Latino Adolescent and Young Adult Cancer Survivors.

BACKGROUND: Low receipt of survivorship care by Latino adolescent and young adult (AYA) cancer survivors necessitates development of age-appropriate and culturally tailored interventions aimed at increasing their perceived need for survivorship care. METHOD: This study describes the development and acceptability testing of a culturally tailored intervention, a photonovela, as part of a community-partnered participatory research (CPPR) project. A four-step approach to the photonovela's development was implemented: (a) literature review, (b) RAND-modified Delphi method, (c) photonovela booklet development, and (d) photonovela acceptability testing through focus groups. Using the CPPR approach, community and academic experts and members worked together at all stages of this project to identify educational domains for the photonovela and ensure that community views and scientific knowledge were equally represented. RESULTS: Cancer survivors and their families described the photonovela as entertaining and relatable. Its story positively reflected their own experiences, and they connected strongly with its characters. Acceptability testing of the photonovela played a significant role in its final script and content, and provided additional new insights into understanding survivorship care perspectives for Latino AYA survivors and their families. CONCLUSION: Equal and shared community and academic involvement through CPPR is essential in identifying unique needs and developing culturally acceptable educational interventions for Latino AYA cancer survivors. The photonovela was seen as an important educational resource in enhancing knowledge and increasing perceived need for survivorship care in this population.

Participatory Technology Development to Enhance Community Resilience.

Objective: To assess the feasibility of a novel, partnered technology development process to co-create mobile health applications (apps) addressing community health priorities, using psychoeducation of cognitive behavioral therapy (CBT) principles for enhancing resilience as an example. Design: Stakeholder engagement, workgroups, pilot feasibility study using mixed methods during October 2013 through January 2016 over three phases: 1) defining the vision of the project and increasing technical capacity, 2) co-development and pilot testing of the app, and 3) planning for sustainability. Setting: An academic-community partnership in South Los Angeles, California. Participants: Eight stakeholders; 30 pilot participants from the community. Main Outcome Measures: Qualitative analysis of audio-recordings of the app development process and stakeholder interviews, surveys of stakeholders' perception of the development process, app use data, and feedback from pilot participants. Results: The participatory technology development process resulted in creation and pilot-testing of a resiliency-focused text messaging app. Of the 1,107 messages sent, 23 out of 30 (77%) app users responded to explore interactive content. Stakeholders reported increased perceived competency in creating mobile apps and that the process fostered a culture of co-leadership. There was also sustained engagement in mobile app development by stakeholders beyond the initial project period. Conclusions: This is the first study, to our knowledge, to demonstrate the feasibility of participatory technology development, an approach involving direct participation in the development, tailoring and maintenance of a mobile app by a broad set of stakeholders with high representation from racial/ethnic minorities from an under-resourced community. Participatory technology development is a promising approach for creating sustainable, relevant and engaging health technologies across different technological, clinical and community settings.

Community Partners in Care: 6- and 12-month Outcomes of Community Engagement versus Technical Assistance to Implement Depression Collaborative Care among Depressed Older Adults.

Objective: Community Partners in Care, a community-partnered, cluster-randomized trial with depressed clients from 95 Los Angeles health and community programs, examined the added value of a community coalition approach (Community Engagement and Planning [CEP]) versus individual program technical assistance (Resources for Services [RS]) to implement depression collaborative care in underserved communities. This exploratory subanalysis examines 6- and 12-month outcomes among CPIC participants aged >50 years. Design: Community-partnered, cluster-randomized trial conducted between April 2010 and March 2012. Setting: Hollywood-Metropolitan (HM) and South Los Angeles (SLA) Service Planning Areas (SPAs), Los Angeles, California. Participants: 394 participants aged >50 years with depressive symptoms (8-item Patient Health Questionnaire score ≥ 10). Intervention: A community-partnered multi-sector coalition approach (Community Engagement and Planning [CEP]) vs individual program technical assistance (Resources for Services [RS]) to implement depression collaborative care. Main Outcome Measures: Depressive symptoms (PHQ-8 score), mental health-related quality of life (MHRQL), community-prioritized outcomes including mental wellness, homelessness risk and physical activity, and services utilization. Results: At 6 months, CEP was more effective than RS at improving MHRQL and mental wellness among participants aged >50 years; no differences were found in the effects of CEP vs RS on other outcomes. No significant outcome differences between CEP and RS were found at 12 months. Conclusions: A multisector community coalition approach may offer additional benefits over individual program technical assistance to improve outcomes among depressed adults aged >50 years living in underserved communities.

Growing a Community-Academic Partnership: Lessons Learned in Forming a Qualitative Interview Team for the Community Partners in Care Study.

By engaging, partnering, and building trust with community members, research on vulnerable populations may offer opportunities to improve population health in communities that suffer from health disparities. While the literature on participatory and partnered approaches offers techniques and strategies for forming community-academic partnerships, less information is available about how partnerships can grow and evolve over time. In this article, we describe the expansion of a long-standing partnership that uses principles of community partnered participatory research (CPPR), a variant of community-based participatory research (CBPR). We outline the preparation and executive phases of conducting qualitative interviewing with highly vulnerable study participants who have already been participants in a longitudinal survey. We describe the challenges and concerns at each phase of the research and summarize some lessons learned. To grow and evolve, the partnership must constantly be reaffirmed in the experiences of new members.

Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards.

The Patient Centered Outcomes Research Institute (PCORI) supports patient-centered clinical comparative effectiveness research (CER) including health disparities and engagement portfolios. In 2013, PCORI launched the Pipeline to Proposal (P2P) mechanism to support development of novel patient- and stakeholder-centered partnerships focused on designing clinical CER funding proposals. By providing a tiered structure of successive small contracts and technical assistance, the P2P mechanism encourages development of new research partnerships among diverse stakeholders. As a comparatively new field, patient-centered outcomes research (PCOR) has few well-delineated methods for engaging patients and other non-scientists in effective teams with academics or clinicians to develop and implement rigorous, scientific research proposals. Community partnered participatory research (CPPR) provides a useful framework for structuring new partnerships. In this article we highlight the origins, development, and prospects of three current examples of funded P2P initiatives based in New Orleans and Los Angeles. We outline how these projects - Prisoner to Patient, the NOLA Partnership, and Resilience Among African American Men - use CPPR principles. We also describe how they have collaborated with, and contributed to, a two-way learning and knowledge exchange among members of the PCORI-funded Community and Patient Partnered Research Network. Lessons learned may be applicable to other groups planning to create new partnerships focused on implementing PCOR.

Creating Safe Spaces: A Community Health Worker-Academic Partnered Approach to Addressing Intimate Partner Violence.

Intimate partner violence (IPV) is a persistent public health problem in the United States, with an estimated one in three women experiencing rape, physical violence, and/or stalking by an intimate partner within her lifetime. Non-Hispanic Black women disproportionately experience IPV, but there has been limited success in implementing culturally appropriate prevention programs and services for members of this population. Community health workers (CHWs) are trusted members of under-resourced communities who provide reliable health information and improve the cultural appropriateness of service delivery and may be a vital resource for developing new IPV interventions. Guided by the principles of community partnered participatory research, we developed the CHW-led Safe Spaces project, which aimed to establish a strong academic-community partnership to focus on issues related to experiences of IPV and the prevention of IPV in New Orleans. In this article, we describe the development of our partnership including the formation of an advisory board, creation of a broad-based stakeholder coalition, offering a community partnered participatory research training, conducting IPV education and outreach, and establishing a research agenda. Our processes are replicable and lessons learned may be relevant to other groups seeking to address IPV by leveraging the strengths of community-academic collaborations and CHWs.

An Assets-Based Approach to Co-Producing a Culturally Adapted Family Intervention (CaFI) with African Caribbeans Diagnosed with Schizophrenia and Their Families.

Objective: To determine how to improve the cultural appropriateness and acceptability of an extant evidence-based model of family intervention (FI), a form of 'talking treatment,' for use with African Caribbean service users diagnosed with schizophrenia and their families. Design: Community partnered participatory research (CPPR) using four focus groups comprising 31 key stakeholders. Setting: Community locations and National Health Service (NHS) mental health care settings in northwest England, UK. Participants: African Caribbean service users (n=10), family members, caregivers and advocates (n=14) and health care professionals (n=7). Results: According to participants, components of the extant model of FI were valid but required additional items (such as racism and discrimination and different models of mental health and illness) to improve cultural appropriateness. Additionally, emphasis was placed on developing a new ethos of delivery, which participants called 'shared learning.' This approach explicitly acknowledges that power imbalances are likely to be magnified where delivery of interventions involves White therapists and Black clients. In this context, therapists' cultural competence was regarded as fundamental for successful therapeutic engagement and outcomes. Conclusions: Despite being labelled 'hard-to-reach' by mainstream mental health services and under-represented in research, our experience suggests that, given the opportunity, members of the African Caribbean community were highly motivated to engage in all aspects of research. Participating in research related to schizophrenia, a highly stigmatized condition, suggests CPPR approaches might prove fruitful in developing interventions to address other health conditions that disproportionately affect members of this community.

Implementing a Randomized Controlled Trial through a Community-Academia Partnered Participatory Research: Arte con Salud Research-Informed Intervention.

OBJECTIVE: "Arte con Salud" is an HIV/AIDS prevention intervention tailored for Puerto Rican women who have sex with men. The intervention curriculum was refined through a community-academic collaboration between Taller Salud, the UPRCayey Campus, and the UCC-School of Medicine, subsided in 2012-13 by PRCTRC. The collaboration has been crucial to validate the impact of using art as a tool to facilitate sexual negotiation skills and safer sexual practices among adult women have sex with men participating in HIV prevention education. METHODS: This article describes the vision, valley, victory phases endured to establish a community-academia partnership based on the CPPR framework as an effective mean to implement a randomized controlled trial intervention (RCT). We also discuss the barriers, outcomes, and lessons learned from this partnership. RESULTS: Some of the identified solutions include: setting goals to secure funding, regular meetings, and the inclusion of undergraduate level students to assist in the implementation of the intervention. These solutions helped to build trust among the community and academic partners. As a result of this collaboration, a total of 86 participants were enrolled and 5 competitive research grants have been submitted. CONCLUSION: The community-academic collaboration was essential in order to build a solid research infrastructure that addresses the complexities of HIV prevention education among groups of Puerto Rican women.

Development of Systemic Interventions to Decrease Breast Cancer Risk: A Group Concept Mapping Study.

As breast cancer continues to take a devasting public health toll, most primary prevention approaches are targeted at individual actions. We have proposed, instead, developing systemic, population approaches to preventing the disease. We used a combined qualitative-quantitative methodology, group concept mapping (GCM), to identify Importance and Feasibility ratings of systemic interventions across a wide spectrum of approaches and stakeholders. Participants (n = 351) from across the state of California sorted 84 potential interventions into topical piles, and then rated each intervention on perceived Importance and Feasibility. Multidimensional scaling and a cluster analysis identified eleven clusters or themes of interventions. Participants rated interventions on Importance and Feasibility differently depending on the region of the state in which they lived. The results of this study underscore the importance of sharing health information with and seeking public health solutions from community partners in general and from beyond the urban areas usually studied.

Using Community-Partnered Participatory Research to Value the "Community Lens" and Promote Equity in Community-Academic Partnerships.

Background: Community input is crucial for identifying characteristics necessary for equitable, sustainable community-academic partnerships (CAPs). A November 2021 conference, honoring the late Dr. Loretta Jones and the Community-Partnered Participatory Research (CPPR) model, was held to gather input for designing a learning institute for community members as co-equal partners with academics in research, program, and policy initiatives. This created an opportunity to explore attendees' perspectives on challenges and opportunities related to CAPs with special focus on promoting equity. Methods: Institutional Review Board approval was obtained. Five break-out discussion group sessions were conducted in November 2021 co-facilitated by both an academic and a community leader. After consent, discussions were recorded and transcribed. An iterative procedure for collaborative-group-thematic-analysis was developed. The six-phase process included rigorous coding, discussion, comparison of data with data, and development and refinement of themes and subthemes. Results: A total of 38 racial-ethnically diverse participants volunteered from the total conference audience of 62 community and academic partners from various sectors including community-based organizations, health care, social services, academia, or policy within Los Angeles County. Analysis led to development of three themes: Being cautious with the extractive tendency of academia and the need for anti-racism within CAPs; Leveraging community power to resist the top-down lens of academia; and bridging two worlds through an equitably structured table. Discussion: Participants described optimism about the future uses of CPPR to enhance CAPs, and the need to address barriers to equitable partnerships owing to unequal social contexts and entrenched power dynamics. Implications include addressing racism, evaluating financial equity in partnerships to promote accountability, and mentoring community leaders to promote equity. Conclusion: Use of a "community lens" for developing sustainable, equitable CAPs is crucial to promote accountability and to responsibly implement authentic CPPR.

The Pittsburgh Study: Learning with Communities About Child Health and Thriving.

The COVID-19 pandemic has highlighted structural inequities that are barriers to thriving for children in neighborhoods with concentrated disadvantage. Health systems are increasingly addressing health-related social needs. The "Pittsburgh Study" is a longitudinal, community-partnered study focused on child and adolescent thriving and racial equity. This initiative will elucidate critical influences on childhood health and thriving, evaluate developmentally appropriate interventions to improve outcomes from birth to high school, and establish a child health data hub. Integration of community members into scientific inquiry, rapid data-to-action cycles, and workforce development are strategies health systems may consider to enhance child health equity.

Establishing a Framework for Sustainable Community Action Research.

Community-based participatory research/community-partnered participatory research (CBPR/CPRR) is viewed as a critical approach for improving health and addressing inequities found in under-resourced communities by pairing community partners and academic partners to address health and environmental concerns. This article aims to amplify the potential of the current CBPR/CPPR models through insights learned from the underserved community of Watts in south central Los Angeles. We discuss our framework that shifts the primary academic focus in the community-academia partnership from individual investigators and/or research groups to the academic institution to generate sustainable partnerships. We summarize the Community Action Research Engagement (CARE) Framework as a new set of recommended tenets to expand CBPR/CPPR. This framework can provide guidance for how universities can catalyze: 1) building trust; 2) facilitating knowledge; 3) advancing solutions; and 4) fostering mentorship in the context of leveraging a university's position to address the root causes of community inequities and thus create more sustained partnerships that achieve greater impact within their surrounding communities.

Perspectives from leadership and frontline staff on telehealth transitions in the Los Angeles safety net during the COVID-19 pandemic and beyond.

Objectives: The start of the COVID-19 pandemic led the Los Angeles safety net health system to dramatically reduce in-person visits and transition abruptly to telehealth/telemedicine services to deliver clinical care (remote telephone and video visits). However, safety net patients and the settings that serve them face a "digital divide" that could impact effective implementation of such digital care. The study objective was to examine attitudes and perspectives of leadership and frontline staff regarding telehealth integration in the Los Angeles safety net, with a focus on telemedicine video visits. Methods: This qualitative study took place in the Los Angeles County Department of Health Services (LAC DHS), the second-largest safety net health system in the US. This system disproportionately serves the uninsured, Medicaid, racial/ethnic minority, low-income, and Limited English Proficient (LEP) patient populations of Los Angeles County. Staff and leadership personnel from each of the five major LAC DHS hospital center clinics, and community-based clinics from the LAC DHS Ambulatory Care Network (ACN) were individually interviewed (video or phone calls), and discussions were recorded. Interview guides were based on the Consolidated Framework for Implementation Research (CFIR), and included questions about the video visit technology platform and its usability, staff resources, clinic needs, and facilitators and barriers to general telehealth implementation and use. Interviews were analyzed for summary of major themes. Results: Twenty semi-structured interviews were conducted in August to October 2020. Participants included LAC DHS physicians, nurses, medical assistants, and physical therapists with clinical and/or administrative roles. Narrative themes surrounding telehealth implementation, with video visits as the case study, were identified and then categorized at the patient, clinic (including provider), and health system levels. Conclusions: Patient, clinic, and health system level factors must be considered when disseminating telehealth services across the safety net. Participant discussions illustrated how multilevel facilitators and barriers influenced the feasibility of video visits and other telehealth encounters. Future research should explore proposed solutions from frontline stakeholders as testable interventions towards advancing equity in telehealth implementation: from patient training and support, to standardized workflows that leverage the expertise of multidisciplinary teams.

Co-created Mobile Apps for Palliative Care Using Community-Partnered Participatory Research: Development and Usability Study.

BACKGROUND: Open design formats for mobile apps help clinicians and stakeholders bring their needs to direct, co-creative solutions. Palliative care for patients with advanced cancers requires intensive monitoring and support and remains an area in high need for innovation. OBJECTIVE: This study aims to use community-partnered participatory research to co-design and pretest a mobile app that focuses on palliative care priorities of clinicians and patients with advanced cancer. METHODS: In-person and teleconference workshops were held with patient and family stakeholders, researchers, and clinicians in palliative care and oncology. Question prompts, written feedback, semistructured interviews, and facilitated group discussions identified the core palliative care needs. Using Chorus, a no-code app-building platform, a mobile app was co-designed with the stakeholders. A pretest with 11 patients was conducted, with semistructured interviews of clinician and patient users for feedback. RESULTS: Key themes identified from the focus groups included needs for patient advocacy and encouragement, access to vetted information, patient-clinician communication support, and symptom management. The initial prototype, My Wellness App, contained a weekly wellness journal to track patient-reported symptoms, goals, and medication use; information on self-management of symptoms; community resources; and patient and caregiver testimonial videos. Initial pretesting identified value in app-based communication for clinicians, patients, and caregivers, with suggestions for improving user interface, feedback and presentation of symptom reports, and gamification and staff coordinators to support patient app engagement. CONCLUSIONS: The development of a mobile app using community-partnered participatory research is a low-technology and feasible intervention for palliative care. Iterative redesign and user interface expertise may improve implementation.

STOP COVID-19 CA: Community engagement to address the disparate impacts of the COVID-19 pandemic in California.

Objective: To describe the early activities and lessons of the Share, Trust, Organize, Partner COVID-19 California Alliance (STOP COVID-19 CA), the California awardee of the NIH-funded multi-state Community Engagement Alliance (CEAL) against COVID-19. The Alliance was established to ensure equity in Coronavirus-19 disease (COVID-19) research, clinical practice, and public health for communities most impacted by the COVID-19 pandemic. Study setting: The STOP COVID-19 CA Alliance network of 11 universities and affiliated partner community-based organizations (CBOs) across California. Study design: Mixed methods evaluation consisting of an analysis of activity (August 2020 to December 2021) detailed in reports submitted by community-academic teams and a survey (August 2021) of academic investigators and affiliated community-based organization (CBO) partners. Data collection: We summarized activities from the 11 community-academic teams' progress reports and described results from an online survey of academic investigators and CBO partners in the California Alliance. Principal findings: A review of progress reports (n = 256) showed that teams fielded surveys to 11,000 Californians, conducted 133 focus groups, partnered with 29 vaccine/therapeutics clinical trials, and led more than 300 town halls and vaccine events that reached Californians from communities disproportionately impacted by COVID-19. Survey responses from academic investigators and CBO partners emphasized the importance of learning from the successes and challenges of the California Alliance teams' COVID-19 initiatives. Both academic and CBO respondents highlighted the need for streamlined federal and institutional administrative policies, and fiscal practices to promote more effective and timely operations of teams in their efforts to address the numerous underlying health and social disparities that predispose their communities to higher rates of, and poor outcomes from, COVID-19. Conclusions: STOP COVID-19 CA represents a new and potentially sustainable statewide community engagement model for addressing health disparities in multiethnic/multicultural and geographically dispersed communities.

Implementation of a Community-Partnered Research Suicide-Risk Management Protocol: Case Study From Community Partners in Care.

OBJECTIVE: Suicidality is common among participants in clinical trials and health services research, but approaches to suicide risk assessment and mitigation vary widely. Studies involving vulnerable populations with limited access to care raise additional ethical concerns. The authors applied a community-partnered approach to develop and implement a suicide-risk management protocol (SRMP) in a depression study in an underresourced setting in Los Angeles. METHODS: Using a community-partnered participatory research framework, the authors designed and adapted the SRMP. Qualitative data regarding SRMP implementation included notes from SRMP development meetings and from study clinicians conducting outreach calls to study participants. Analyses included baseline and 6- and 12-month telephone survey data from 1,018 enrolled adults with moderate to severe depressive symptoms (8-item Patient Health Questionnaire score ≥10), of whom 48% were Black and 40% Latino. RESULTS: Community stakeholders prioritized a robust SRMP to ensure participant safety. Features included rapid telephone outreach by study clinicians in all cases of reported recent suicidality and expedited treatment access. Using a suicidality timeframe prompt of "in the past 2 weeks," endorsement of suicidality was common (15% at baseline, 32% cumulative). Midway through the study, the SRMP was modified to assess for present suicidality, which reduced the frequency of clinician involvement. Overall, 318 outreach calls were placed, with none requiring an emergency response. Treatment referrals were provided in 157 calls, and outreach was well received. CONCLUSIONS: SRMP implementation in research involving underresourced and vulnerable communities merits additional considerations. Partnering with community stakeholders can facilitate the development of acceptable and feasible SRMP procedures.

Improving Cancer Survivorship Care for Latino Adolescent, Young Adult Survivors through Community-Partnered Participatory Research.

Background: Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. Objective: This study describes the infrastructure of a community-partnered participatory research (CPPR) project between a community-based organization and a National Cancer Institute (NCI)-designated cancer center to develop culturally-tailored interventions to improve Latino AYA cancer survivor knowledge regarding their need for survivorship care. Methods: Research team participants included the community organization and NCI cancer center directors, a research coordinator, a community liaison, and cross-training program interns. Through use of Jones's theoretical framework, additional stakeholders from academic and community settings were identified and invited to participate in the research team. A process evaluation and qualitative interviews were conducted to assess equal partnership between community and academic stakeholders and determine if the infrastructure followed the five core principles of CPPR. A grounded theory approach was used to analyze qualitative data. Conclusions: CPPR between an NCI-designated cancer center and a community-based organization is a new research model for conducting minority AYA cancer survivor outreach. Open communication was critical in engaging the Latino community to discuss their survivorship needs. Community stakeholders were key to infrastructure success through fostering a cohesive partnership with and acting as the voice of the Latino community. Implementing a cross-training program promoted continued engagement of community members with academic partners. Proper infrastructure development is critical to building successful research partnerships in order to develop culturally-tailored interventions to improve survivorship care knowledge.

THRIVE Conceptual Framework and Study Protocol: A Community-Partnered Longitudinal Multi-Cohort Study to Promote Child and Youth Thriving, Health Equity, and Community Strength.

BACKGROUND: Given the profound inequities in maternal and child health along racial, ethnic, and socioeconomic lines, strength-based, community-partnered research is required to foster thriving children, families, and communities, where thriving is defined as optimal development across physical, mental, cognitive, and social domains. The Pittsburgh Study (TPS) is a community-partnered, multi-cohort study designed to understand and promote child and youth thriving, build health equity, and strengthen communities by integrating community partners in study design, implementation, and dissemination. TPS launched the Tracking Health, Relationships, Identity, EnVironment, and Equity (THRIVE) Study to evaluate children's developmental stages and contexts from birth through completion of high school and to inform a child health data hub accessible to advocates, community members, educators, health professionals, and policymakers. METHODS AND ANALYSIS: TPS is rooted in community-partnered participatory research (CPPR), health equity, antiracism, and developmental science. Using our community-informed conceptual framework of child thriving, the THRIVE Study will assess cross-cutting measures of place, environment, health service use, and other social determinants of health to provide longitudinal associations with developmentally appropriate child and youth thriving outcomes across participants in six cohorts spanning from pregnancy through adolescence (child ages 0-18 years). Data from electronic health records, school records, and health and human services use are integrated to assess biological and social influences of thriving. We will examine changes over time using paired t-tests and adjusted linear regression models for continuous thriving scores and McNemar tests and adjusted logistic regression models for categorical outcomes (thriving/not thriving). Data analyses will include mixed models with a random intercept (in combination with the previously-specified types of regression models) to account for within-subject correlation. DISCUSSION: By enhancing assessment of child and youth well-being, TPS will fill critical gaps in our understanding of the development of child and youth thriving over time and test strategies to support thriving in diverse communities and populations. Through CPPR and co-design, the study aims to improve child health inequities across multiple socioecological levels and developmental domains.