Community-partnered Participatory Research Research Articles

'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production.

In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other's sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights.

Engaging African American Faith Leaders as Partners in Ethical Research

This paper outlines an initiative to adapt the Community Partnered Research Ethics Training (CPRET) for the cultural context of the CHURCH (Congregation as Healers Uniting to Restore Community Health) project. The CHURCH project is a community-partnered participatory research project that seeks to promote the mental well-being of African American populations by developing, implementing, and evaluating a mental health training curriculum for faith leaders in Black churches. Participatory research, in which community stakeholders collaborate with researchers as equal partners to address problems impacting marginalized communities, has recently become more popular in academia. Training is necessary to equip community partners with the skills and knowledge required for full research participation. Community partners frequently encounter ethical issues in participatory research, but limited training resources are available to proactively prevent and address such issues. The CPRET was developed through a collaboration between the Clinical and Translational Science Institute and the Human Research Protection Office and Community Research Advisory Board at the University of Pittsburgh. It surveys research processes and core research ethics principles, and it stimulates discussion regarding best practices by engaging participants in scenario-based exercises in which they identify ethical and unethical research. By describing how we utilized the CPRET in the CHURCH project and presenting a summary of participant feedback, we aim to build resources for community-engaged scholars seeking to engage community members in ethical research.

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

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. 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. 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. 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. Use of a "community lens" for developing sustainable, equitable CAPs is crucial to promote accountability and to responsibly implement authentic CPPR.

"She Is Stand-Offish Like That": Black Adults' Recognition of Child Behaviors Associated with Autism Spectrum Disorder.

The purpose of this study is to identify the sociocultural factors in the Black community that contribute to a delay in identification of Black children with autism spectrum disorder (ASD). Four focus groups with parents of typically developing children were conducted at 2 Black Churches using a community-partnered participatory research approach and the socioecological model. Participants completed sociodemographic surveys, viewed CDC Autism Training Videos of Black children with ASD, and reported on their behavioral observations. Focus groups were audio recorded and transcribed. Thematic data analysis was conducted using NVivo software. At the individual level, participants interpreted ASD-associated behaviors as a problem of timing of developmental milestones in the course of normative development rather than a sign of a disorder and positive and negative characteristics. At the interpersonal level, the role of grandparents and extended family was important for monitoring child development. At the organizational level, racial concordance with health care providers was seen as critical because of historical mistrust. At the community level, fear of racism and child protective services and inequitable care emerged. At the policy level, there were concerns about access to affordable, high-quality care. This study provides insight into the sociocultural factors in the faith-based Black community that may contribute to a delay in identification of Black children with ASD. Health care professionals need additional training to effectively serve Black children and families in the face of historical mistrust and health care inequity.

Recruitment and Feasibility of Hair Cortisol Collection in a Sample of Ethnically and Sexually Diverse, Low-Income Adults: A Qualitative Community-Partnered Participatory Research Study.

The current study describes how a community-partnered participatory research (CPPR) model was used to enhance hair cortisol research engagement among low-income adults of diverse ethnicities and sexual and gender identities. Participants' reported motivations and concerns surrounding providing a hair sample are also described. Participants from a larger longitudinal study were invited to provide a hair sample and/or complete acceptability interviews. Results indicated that 71% of all persons (N=133) contacted participated in the current study, of whom 82% provided hair samples. Several themes emerged from the interviews indicating that participants were motivated to provide a hair sample due to internal and external factors; however, concerns about mistrust of research remained. Thus, collecting biospecimens in research with underserved groups requires careful consideration of benefits and risks to the individual and their communities. Our results provide guidelines for engaging low-income racially/ethnically and sexually diverse community members in biospecimen research to understand stress-health relationships.

WITHDRAWN-Administrative Duplicate Publication: Mural Painting to Collect Sensitizing Data and Encourage Research Participation Among U.S. Latinos.

To describe a mural-based intervention that can be implemented in partnership with community members in Latino neighborhoods in order to improve awareness of barriers to recruitment/retention of U.S. Latinos in clinical research, while augmenting researchers' access to sensitizing concepts critical for rigorous study design. Background. Latinos in the United States suffer disproportionately from several chronic illnesses but are under-represented as researchers and participants in the National Institutes of Health-funded research. This lack of representation inhibits a nuanced awareness of the health needs of U.S. Latinos and hampers efforts to address a persistent lack of health equity among U.S. Latinos and other communities of color. Art-based interventions implemented in Latino communities are increasingly being recognized for their ability to bridge this gap and positively affect the quality and quantity of research partnerships between clinical researchers and U.S. Latinos. This article describes a mural-based intervention piloted in two predominantly Latino neighborhoods between 2016 and 2020. The design of this method was guided by community-partnered participatory research practices and involved an Assessment-Diagnosis-Planning-Implementation-Evaluation approach. Mural painting addressed many of the participation challenges often associated with under-representation of Latinos in academic research and allowed for sensitizing interviews with key community members surrounding topics of interest to the research team. Research methods that acknowledge traditional art forms, such as mural painting, create a space for building trust and spark interest in future research participation, while augmenting researchers' access to sensitizing concepts that may improve the cultural competence of future studies, projects, and interventions.

Women-Reported Barriers and Facilitators of Continued Engagement with Medications for Opioid Use Disorder.

Opioid-related fatalities increased exponentially during the COVID-19 pandemic and show little sign of abating. Despite decades of scientific evidence that sustained engagement with medications for opioid use disorders (MOUD) yields positive psychosocial outcomes, less than 30% of people with OUD engage in MOUD. Treatment rates are lowest for women. The aim of this project was to identify women-specific barriers and facilitators to treatment engagement, drawing from the lived experience of women in treatment. Data are provided from a parent study that used a community-partnered participatory research approach to adapt an evidence-based digital storytelling intervention for supporting continued MOUD treatment engagement. The parent study collected qualitative data between August and December 2018 from 20 women in Western Massachusetts who had received MOUD for at least 90 days. Using constructivist grounded theory, we identified major themes and selected illustrative quotations. Key barriers identified in this project include: (1) MOUD-specific discrimination encountered via social media, and in workplace and treatment/recovery settings; and (2) fear, perceptions, and experiences with MOUD, including mental health medication synergies, internalization of MOUD-related stigma, expectations of treatment duration, and opioid-specific mistrust of providers. Women identified two key facilitators to MOUD engagement: (1) feeling “safe” within treatment settings and (2) online communities as a source of positive reinforcement. We conclude with women-specific recommendations for research and interventions to improve MOUD engagement and provide human-centered care for this historically marginalized population.

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

BackgroundOpen 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.ObjectiveThis 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.MethodsIn-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.ResultsKey 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.ConclusionsThe 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.

Communities for Wellness Equity: Implementing a Partnered Symposium to Identify Social Determinants of Health Priorities.

Social determinants of health (SDoH) affect under-resourced communities. Such communities are seldom involved in defining and prioritizing local SDoH for policy action. Apply community-partnered, participatory research (CPPR) to identify community stakeholder priorities for addressing SDoH in South Los Angeles. Over 10 months, CPPR was applied to develop a multi-sector partnership and working group to plan and host a symposium for community stakeholders. 148 individuals and 16 organizations participated and engaged in focus and symposium-wide discussions. Themes were identified through collaborative inductive content analysis.Results and Lessons Learned: Participants identified ten specific SDoH, such as housing, with structural racism and discrimination as the underlying cause. Using CPPR to gain community members' insight about local factors that drive individual and community health is feasible and viewed by the community as socially responsible, suggesting it holds promise to address root causes of health inequality in under-resourced communities.

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

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. 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. 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. 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.

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

BackgroundGiven 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 AnalysisTPS 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.DiscussionBy 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.

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

Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. 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. 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. 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.

Community Partnered Participatory Research methods as tools for racial justice and health equity.

Community Partnered Participatory Research methods as tools for racial justice and health equity.

The ethical challenges and opportunities of implementing engagement strategies in health research

PurposeThe American College of Epidemiology (ACE) held its 2019 Annual Meeting in Pasadena, California, September 7–10 with a theme of “Real-World Epidemiologic Evidence in Policy and Practice”. The ACE Ethics Committee hosted a symposium session at the annual meeting on the ethical challenges of stakeholder engagement in the health research setting. The purpose of this paper is to further examine the design and conduct of stakeholder engagement and reflect on the ethical challenges with the goal of offering best practices and identifying areas where future guidance, critical reflection and teaching may be needed. MethodsThree speakers with diverse affiliations were selected to present on the opportunities and ethical challenges of stakeholder engagement in epidemiology and community health. Dr. K Coleman presented an “Overview of Stakeholder-Engaged Research Strategies” and “Engaging Stakeholders in Retrospective Observational Studies”; Dr. J Salerno presented on “An Ethical Perspective to Optimize Engagement Strategies”; and Ms. F Jones presented on the “Structure of Community-Partnered Participatory Research”. ResultsThree main insights were identified: (1) the need for a unifying framework of ethical principles for the implementation of stakeholder engagement, (2) an expanded set of research activities for stakeholders aligned with their engagement in epidemiology studies, and (3) strengths of a community-based partnership model of stakeholder engagement in community health, known as community-partnered participatory research (CPPR). ConclusionsThere is a need to broaden the dialogue and understanding of stakeholder engagement for researchers who are increasingly faced with the ethical challenges of implementing approaches and strategies to engage patients, communities, policy makers and the public as stakeholders. To address current challenges, we offered a unifying framework to guide best practices of stakeholder engagement by integrating the core ethical principles of research conduct involving human subjects with the guiding principles of patient engagement. We shared 2 model overviews of implementing stakeholder engagement: (1) a 4-staged model when implementing stakeholder engagement using an epidemiological study design, (2) a stakeholder engagement model rooted in authentic academic-community partnerships, known as community-partnered participatory research (CPPR) to address depression disparities. By critically reflecting on stakeholder engagement across disciplines and appraising the opportunities and ethical challenges of implementing stakeholder engagement in health research, we have provided insights on how to operationalize, conduct and implement stakeholder engagement and have contributed to moving this important field forward.

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

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. 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. 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. 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.

Engaging LGBTQ Communities in Community-Partnered Participatory Research: Lessons from the Resilience Against Depression Disparities Study.

The Resilience Against Depression Disparities (RADD), a community partnered, randomized comparative effectiveness study, aimed to address mental health in Lesbian, Gay, Bisexual, Transgender, and Queer/Questioning (LGBTQ) racial/ethnic populations in New Orleans and Los Angeles. To describe engagement methods, lessons learned, and recommendations in engaging LGBTQ individuals and agencies throughout the RADD study. RADD used a community partnered participatory research framework to engage LGBTQ community members and agencies. Observational and quantitative data were collected to describe engagement activities and study adaptations from October 2016 to May 2019. Our partnered approach resulted in multiple study adaptations. The principles of cultural humility, coleadership, and addressing health determinants were important to successful engagement with LGBTQ community members and study participants. We recommend maintaining cultural humility as the tenant of all research activities. This project's engagement plan demonstrates that community-academic partnerships can be forged to create and modify existing study models for LGBTQ communities.

Resilience Against Depression Disparities (RADD): a protocol for a randomised comparative effectiveness trial for depression among predominantly low-income, racial/ethnic, sexual and gender minorities

IntroductionDepression is the leading cause of adult disability and common among sexual and gender minority (SGM) adults. The current study builds on findings showing the effectiveness of depression quality improvement...

Maintaining Internal Validity in Community Partnered Participatory Research: Experience from the Community Partners in Care Study.

With internal validity being a central goal of designed experiments, we seek to elucidate how community partnered participatory research (CPPR) impacts the internal validity of public health comparative-effectiveness research. Community Partners in Care (CPIC), a study comparing a community-coalition intervention to direct technical assistance for disseminating depression care to vulnerable populations, is used to illustrate design choices developed with attention to core CPPR principles. The study-design process is reviewed retrospectively and evaluated based on the resulting covariate balance across intervention arms and on broader peer-review assessments. Contributions of the CPIC Council and the study's design committee are highlighted. CPPR principles contributed to building consensus around the use of randomization, creating a sampling frame, specifying geographic boundaries delimiting the scope of the investigation, grouping similar programs into pairs or other small blocks of units, collaboratively choosing random-number-generator seeds to determine randomized intervention assignments, and addressing logistical constraints in field operations. Study protocols yielded samples that were well-balanced on background characteristics across intervention arms. CPIC has been recognized for scientific merit, has drawn attention from policymakers, and has fueled ongoing research collaborations. Creative and collaborative fulfillment of CPPR principles reinforced the internal validity of CPIC, strengthening the study's scientific rigor by engaging complementary areas of knowledge and expertise among members of the investigative team.

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.

Partnering with African American Churches to Create a Community Coalition for Mental Health.

Community partnered participatory research (CPPR) emphasizes community engagement, respect, and empowerment as guiding principles to promote mental health equity. This article describes the "Vision" stage of a CPPR-informed model to implement evidence-based practices for depression in two African American churches in Harlem, New York. Essential parts of the Vision include engagement of stakeholders and collaborative planning. The engagement process increased awareness about the project via a community-focused mental health symposium. The collaborative planning stage resulted in creating a multi-disciplinary Community Coalition for Mental Health, establishing the Coalition's values, agreeing to change the initial chosen study intervention from Interpersonal Counseling to Mental Health First Aid, and developing a website to disseminate the group's work. Key lessons learned from our partnered process are: 1) support from the lead pastor is crucial; 2) balancing community and academic interests can be challenging; 3) icebreaker activities foster relationships and reinforce CPPR principles; 4) multiple communication channels can enhance community participation; and, 5) should organize data in ways that make them easier to interpret.