Introduction

We created a COVID-19 Research Patient and Community Advisory Board (PCAB) to provide patient and community input into clinical and translational research studies. The purpose of this article is to describe the PCAB creation, implementation, and evaluation.

Methods

We identified PCAB members who had participated in previous stakeholder engaged activities at our institution and invited their participation. We created a systematic consultation process where researchers could submit plain language research summaries and questions for the PCAB. A facilitated 1-hour virtual consultation was then held where PCAB members provided feedback. We assessed satisfaction of PCAB members and researchers who received consultations using surveys. We also reviewed video recordings of PCAB consultations and reflections from team meetings to identify key lessons learned.

Results

Twenty-seven PCAB members took part in 23 consultation sessions. Twenty-two completed an evaluation survey (81% response rate). Most members agreed or strongly agreed their opinions were valued (86%), it was a productive use of time (86%) and were satisfied (86%). Nineteen researchers completed an evaluation survey (83% response rate). Researchers reported positive experiences of working with the PCAB. Additional insights include limited funding in COVID-19 research for equitable community engagement, deficiencies in researcher communication skills, and a lack of cultural humility incorporated into study activities.

Conclusions

PCAB members provided recommendations that maximized the patient-centeredness and health equity focus of COVID-19 research. The detailed description of the process of developing, implementing, and evaluating our PCAB can be used as a template for others wishing to replicate this engagement model.

Background

COVID-19 vaccination rates are lower among historically marginalized populations, including Black/African American and Latinx populations, threatening to contribute to already high COVID-19 morbidity and mortality disparities for these groups. We conducted a community-based participatory research study using qualitative methods to explore knowledge and beliefs about COVID-19 vaccination among Black/African American, Latinx, and Chinese American residents of the San Francisco Bay Area and assess their views on vaccination outreach and delivery strategies.

Methods and findings

Data were collected from January 14, 2021, to February 24, 2021, with adult residents (N = 109 [Female: N = 76; 70%]) in San Francisco. Focus groups (N = 10) and in-depth interviews (N = 25) were conducted among Black/African Americans (N = 35), Latinx (N = 40), and Chinese Americans (n = 34) in English, Spanish, Cantonese, or Mandarin. Themes were identified using grounded field theory, and included misinformation, mistrust of government and health institutions, and linguistic and other barriers to vaccine access. All three racial/ethnic groups had experiences with vaccine misinformation and information overload. Many African American and Latinx participants cited structural and interpersonal racism, and anti-immigrant discrimination, as factors reducing their trust in government and public health disseminated information and their willingness to be vaccinated. Participants expressed trust in community-based organizations, including faith-based organizations and community-run clinics. Participants often experienced barriers to vaccine access, such as transportation to drive-in sites, with Latinx and Chinese American groups also frequently citing language barriers.

Conclusions

Vaccine outreach strategies must acknowledge how longstanding systemic, institutional, and structural racism contributes to mistrust in government and health institutions and engage with and support trusted messengers from the community to eliminate cultural, linguistic, and other barriers to vaccine access.

Background

COVID-19 vaccination rates among U.S. young adults, particularly in communities of color, remain lower than other age groups. We conducted a qualitative, community-based participatory study to explore beliefs and attitudes about COVID-19 vaccines among young adults in Black/African American, Latinx, and Asian American or Pacific Islander (AAPI) communities in the San Francisco Bay Area.

Methods

We conducted six focus groups between June and August 2021. Participants were recruited by partnering with community-based organizations in the San Francisco Bay Area. Focus groups included Black/African American (N=13), Latinx (N=20), and AAPI (N=12) participants between 18 and 30 years of age. Emerging themes were identified using a modified Grounded Theory approach.

Results

Prominent themes among all three racial-ethnic groups included mistrust in medical and government institutions, strong conviction about self-agency in health decision-making, and exposure to a thicket of contradictory information and misinformation in social media. Social benefit and a sense of familial and societal responsibility were often mentioned as reasons to get vaccinated. Young adult mistrust had a generational flavor fueled by anger about increasing inequity, the profit-orientation of pharmaceutical companies and health institutions, society's failure to rectify injustice, and pessimism about life prospects.

Conclusion

Factors influencing vaccine readiness among Black/African American, Latinx, and AAPI young adults have a distinct generational and life-course texture. Outreach efforts should appeal to young adults' interest in family and social responsibility and the social benefits of vaccination, while being cognizant of the friction mandates pose for young adults' sense of self-agency. Efforts will be most effective coming from trusted messengers with a proven commitment to communities of color and health equity.

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.

Introduction

Clinical and Translational Science Award Program (CTSA)-funded institutions were charged with developing clinical and translational science programs and transforming clinical research at their institutions. Community engagement (CE) was recognized as a key component and catalyst of that transformation. CE hub capacities for working with communities and translating knowledge into practice have been illustrated through their COVID-19 responses.

Methods

CE hub leaders met and discussed their CTSA's early responses regarding the COVID-19 pandemic. The 2-hour discussion was distilled into themes which were sent to the CE hub leaders with a request for written accounts describing actions taken to engage local partners, communities, and institutions. The written reports form the basis for this compendium.

Results

Eighteen institutions submitted written reports describing activities in relation to six themes: (1) listen to the community and respond to concerns, (2) collect data to understand the impact of COVID-19 on distinct communities and groups, (3) communicate science and address misinformation, (4) collaborate with health departments, (5) engage hubs and underrepresented populations in COVID-19 research, and (6) support our own well-being and that of others.

Conclusions

Bidirectional interactions comprise the foundation of CE, which requires trusted partnerships that sustain communication through a series of activities and goals. The nimble responses to the pandemic substantiate the need for CE programs to maintain the infrastructure necessary to achieve the primary CTSA goals of improving health within and across communities and localities as well as expanding research participation of community members.