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OBJECTIVES/GOALS: To outline the successes of Partners for the Advancement of Community Engaged Research (PACER), a Special Interest Group (SIG) of ACTS, created to bring together academic and community researchers to promote best practices, contribute to science and form collaborative networks to improve public health through community research and dissemination. METHODS/STUDY POPULATION: Developed from the CTSA Key Function Committee, PACER began monthly meetings in early 2015. Zoom replaced teleconference technology for the initial email list of about 100 people from 50 institutions which has grown to 225 members from 88 affiliates. Meeting attendance is 40 to 50. PACER meetings start with operational updates and member announcements (15 minutes), proceed to presentations (20-25 minutes), followed by Q & A and discussion (20 minutes). A subset of members functions as an Operations Workgroup, meeting monthly to discuss emerging issues and guide the group’s activities. Email traffic is intentionally limited to one or two messages a month, including meeting announcements. RESULTS/ANTICIPATED RESULTS: PACER meetings have included 65 presentations. Featured speakers have described local community engaged research, explored methodology, and talked about diversifying the workforce, ethics, programs and partnerships. PACER members have collaborated on three manuscripts published in the Journal of Clinical and Translational Science; one with 50 members and 20 institutions contributing. Additionally, PACER members obtained two federal grants, including a network to recruit underrepresented scientists and diverse participants for the All of Us precision medicine effort. These projects totaled $23.5M in funding and involved 9 CTSA hubs. Measuring the value of ongoing dialogue and promulgation of successful practices through presentations has proven challenging. DISCUSSION/SIGNIFICANCE: ACTS support helps PACER SIG members share research interests, develop papers and proposals, and archive meeting materials on the SIG webpage. Beginning with Translational Science 2018, the in-person PACER meeting is a much-anticipated opportunity to meet colleagues and foster new collaborations, and is a critical addition to the PACER calendar.
The COVID-19 pandemic presented a challenge to established seed grant funding mechanisms aimed at fostering collaboration in child health research between investigators at the University of Minnesota (UMN) and Children’s Hospitals and Clinics of Minnesota (Children’s MN). We created a “rapid response,” small grant program to catalyze collaborations in child health COVID-19 research. In this paper, we describe the projects funded by this mechanism and metrics of their success.
Using seed funds from the UMN Clinical and Translational Science Institute, the UMN Medical School Department of Pediatrics, and the Children’s Minnesota Research Institute, a rapid response request for applications (RFAs) was issued based on the stipulations that the proposal had to: 1) consist of a clear, synergistic partnership between co-PIs from the academic and community settings; and 2) that the proposal addressed an area of knowledge deficit relevant to child health engendered by the COVID-19 pandemic.
Grant applications submitted in response to this RFA segregated into three categories: family fragility and disruption exacerbated by COVID-19; knowledge gaps about COVID-19 disease in children; and optimizing pediatric care in the setting of COVID-19 pandemic restrictions. A series of virtual workshops presented research results to the pediatric community. Several manuscripts and extramural funding awards underscored the success of the program.
A “rapid response” seed funding mechanism enabled nascent academic-community research partnerships during the COVID-19 pandemic. In the context of the rapidly evolving landscape of COVID-19, flexible seed grant programs can be useful in addressing unmet needs in pediatric health.
To improve maternal health outcomes, increased diversity is needed among pregnant people in research studies and community surveillance. To expand the pool, we sought to develop a network encompassing academic and community obstetrics clinics. Typical challenges in developing a network include site identification, contracting, onboarding sites, staff engagement, participant recruitment, funding, and institutional review board approvals. While not insurmountable, these challenges became magnified as we built a research network during a global pandemic. Our objective is to describe the framework utilized to resolve pandemic-related issues.
We developed a framework for site-specific adaptation of the generalized study protocol. Twice monthly video meetings were held between the lead academic sites to identify local challenges and to generate ideas for solutions. We identified site and participant recruitment challenges and then implemented solutions tailored to the local workflow. These solutions included the use of an electronic consent and videoconferences with local clinic leadership and staff. The processes for network development and maintenance changed to address issues related to the COVID-19 pandemic. However, aspects of the sample processing/storage and data collection elements were held constant between sites.
Adapting our consenting approach enabled maintaining study enrollment during the pandemic. The pandemic amplified issues related to contracting, onboarding, and IRB approval. Maintaining continuity in sample management and clinical data collection allowed for pooling of information between sites.
Adaptability is key to maintaining network sites. Rapidly changing guidelines for beginning and continuing research during the pandemic required frequent intra- and inter-institutional communication to navigate.
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.
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.
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.
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.
ABSTRACT IMPACT: We review our strategy to use live community events on Facebook to share health and clinical research information and share further steps to increase engagement. OBJECTIVES/GOALS: To describe the use of live community events to enhance communication about clinical and health research through a Facebook platform (MN Research Link) with diverse social media users. The project identified variables associated with video engagement and strategic implications. METHODS/STUDY POPULATION: From June 2019 to November 2020 we streamed 31 events on the MN Research Link Facebook public page. Events highlighted different investigators’ clinical and health research in the areas of mental health, health and wellness, chronic diseases and immunology/infectious diseases. Facebook analytics were used to determine the number of views, total minutes viewed, average video watch time, and audience retention. Engagement score was calculated as the total number of interactions (likes, shares, and comments) divided by total number of followers (N=1437), expressed as a percentage RESULTS/ANTICIPATED RESULTS: Events averaged 24secs/16 min (SD=0.4). A mean of 1.61 (SD=1.28) followers viewed the events live but an average of 417.52 (SD=793.50) followers viewed after the event posted. The average engagement score was 1.1%. Mean total minutes viewed for all 31 videos was 253.5 (SD= 437.6). Viewers spent an average of 17 seconds (SD=0.01) watching each piece of video content. On average 28 followers viewed the events for at least 1-minute event (SD= 48.7). Audience retention at the halfway point for each video was 15.74% (SD=0.19). DISCUSSION/SIGNIFICANCE OF FINDINGS: Results suggest that novel approaches are necessary for active engagement. Promotion of live events is recommended to increase participation and length of engagement. Prior length of engagement (average 17 seconds), suggests refining video introduction will increase engagement.
Community engagement is important for advancing Clinical and Translational Science (CTS), but face-to-face engagement has limited reach and scale. We examined the feasibility of a novel virtual Facebook community platform for public engagement on health research statewide in Minnesota.
The Facebook platform, MN Research Link, was evaluated from June 19, 2019 to June 30, 2020. Facebook advertisements and boosts were used to recruit followers. Content, based on prior formative work, included health research information and interactive postings (e.g., live interviews with researchers). Standard metrics obtained from Facebook analytics included participation (followers), content reach (views), and engagement (likes, shares, comments, clicks).
During the 12-month period, we acquired 1406 followers (31% rural residents), with a retention of followers of 99.7%. Mean number of views per month was 9379.83 (Mdn = 2791, range 724–41,510). Engagement metrics indicated a mean of 535.2 likes, shares, comments, and/or clicks per month (Mdn = 296.5, range 55–1535). The page continued to acquire new followers, but a slight decrease in engagement was observed in the final months after state COVID-19 mitigation strategies were implemented.
As the complexity of CTS continues to grow, along with social distancing measures resulting from the COVID-19 pandemic, the availability of virtual digital platforms to reach and engage community stakeholders in conversations about health and research has increasing importance. Preliminary findings from this program evaluation indicate that a Facebook community platform is feasible to engage Minnesota residents in conversations around health and research topics. Future work will evaluate its potential for reach, scale, and sustainability.
Efforts to move community engagement in research from marginalized to mainstream include the NIH requiring community engagement programs in all Clinical and Translational Science Awards (CTSAs). However, the COVID-19 pandemic has exposed how little these efforts have changed the dominant culture of clinical research. When faced with the urgent need to generate knowledge about prevention and treatment of the novel coronavirus, researchers largely neglected to involve community stakeholders early in the research process. This failure cannot be divorced from the broader context of systemic racism in the US that has contributed to Black, Indigenous, and People of Color (BIPOC) communities bearing a disproportionate toll from COVID-19, being underrepresented in COVID-19 clinical trials, and expressing greater hesitancy about COVID-19 vaccination. We call on research funders and research institutions to take decisive action to make community engagement obligatory, not optional, in all clinical and translational research and to center BIPOC communities in this process. Recommended actions include funding agencies requiring all research proposals involving human participants to include a community engagement plan, providing adequate funding to support ongoing community engagement, including community stakeholders in agency governance and proposal reviews, promoting racial and ethnic diversity in the research workforce, and making a course in community engaged research a requirement for Masters of Clinical Research curricula.
Stakeholder engagement is acknowledged as central to dissemination and implementation (D&I) of research that generates and answers new clinical and health service research questions. There is both benefit and risk in conducting stakeholder engagement. Done wrong, it can damage trust and adversely impact study results, outcomes, and reputations. Done correctly with sensitivity, inclusion, and respect, it can significantly facilitate improvements in research prioritization, communication, design, recruitment strategies, and ultimately provide results useful to improve population and individual health. There is a recognized science of stakeholder engagement, but a general lack of knowledge that matches its strategies and approaches to particular populations of interest based on history and characteristics. This article reviews stakeholder engagement, provides several examples of its application across the range of translational research, and recommends that Clinical Translational Science Awards, with their unique geographical, systems, and historical characteristics, actively participate in deepening our understanding of stakeholder engagement science and methods within implementation and dissemination research. These recommendations include (a) development of an inventory of successful stakeholder engagement strategies; (b) coordination and intentionally testing a variety of stakeholder engagement strategies; (c) tool kit development; and (d) identification of fundamental motivators and logic models for stakeholder engagement to help align stakeholders and researchers.
Research opportunities associated with the proliferation of the electronic health record (EHR), big data initiatives, and innovative approaches to trial design can present challenges for obtaining and documenting informed consent. Broad-scale informed consent (a term used herein to describe institutional models, rather than the Common Rule’s strict regulatory definition for “broad consent”) may facilitate the use of existing data and samples and speed the pace of research by minimizing barriers to consent. We explored the use of broad-scale informed consent within the Clinical Translational Science Award (CTSA) Program Network.
We surveyed CTSA Hubs concerning policies, practices, experiences, and needs within three domains of broad-scale informed consent: (1) participant recontact; (2) biospecimens; and (3) clinical data sharing.
Of 61 CTSA Hubs surveyed, 37 (61%) indicated ongoing work related to at least 1 domain of broad-scale informed consent; 18 Hubs (30%) reported work in all 3 domains. The EHR predominated as the implementation system across all three domains. Research and IT leadership and the Institutional Review Board were most commonly endorsed as institutional drivers, while systems/technical issues and impact on clinical workflow were the most commonly reported barriers.
While survey results indicate considerable variability in the implementation of broad-scale informed consent across the CTSA consortium, it is clear that all CTSA Hubs are actively considering policy and process related to these concepts. Next steps cluster within three areas: training and workforce development, streamlined policies and templates, and implementation strategies that facilitate integration into clinical workflow.
Explorations of workflow development within primary care allow us to understand initial steps in the pace of knowledge and practice acclimatization within clinics. This study describes use of practice facilitation as an implementation strategy to communicate shared project goals and monitor and support refinement of practice behavior. This study engaged eight health care organizations, including 55 primary care practices, ≈380 clinicians, and ≈620 nursing and support staff in a guideline implementation project regarding United States Preventive Services Task Force use of aspirin recommendations for primary prevention of cardiovascular events.
Researchers have explored using the internet and social media to recruit participants to specific research projects. Less systematic work has been done to inform the engagement of large populations in virtual communities to advance clinical and translational science. We report on our first step to use social media to engage Minnesota residents by studying the willingness of participants to engage in a virtual (Facebook) community about the concepts of health and health-related research.
Data were collected at the 2018 Minnesota State Fair using a cross-sectional, 46-item survey with assessment including sociodemographics and willingness to engage in a Facebook group for health-related research. Quantitative analysis included univariate, bivariate, and multivariate analyses. Content analysis was used to generate themes from open-ended survey responses.
Five hundred people completed the survey; after data cleaning, 418 participant responses informed this report. A majority were younger than age 50 (73%), female (66%), and married/partnered (54%). Overall, 46% of participants agreed/strongly agreed they are willing to join the Facebook group. Multivariate logistic regression identified social media use over the past 6 months as the sole variable independently associated with willingness to join the Facebook group (once a day vs. never or rarely OR = 1.82 (0.86, 3.88), several hours a day vs. never or rarely OR = 2.17 (1.17, 4.02, overall p-value 0.048).
Facebook holds potential for reaching a broader community, democratizing access to and engagement with clinical and translational research. Social media infrastructure and content could be disseminated to other institutions with Clinical and Translational Science Awards.
OBJECTIVES/SPECIFIC AIMS: Virtual communities are an untested method to enhance community engagement in biomedical research. Our CTSA Hubs collaborated to assess receptivity to engage in a statewide Facebook (FB) group. METHODS/STUDY POPULATION: Cross-sectional online survey administered via iPads at the MN State Fair in 2018 to adults aged 18+ years residing in MN assessed demographics, social media use, interest in participating in a FB group for biomedical research; and open-ended questions on health topics of interest, and what would keep people engaged in this group. RESULTS/ANTICIPATED RESULTS: Respondents (N=487) were 21% racial minorities and 65% female sex. Most (87%, n=422) had created a personal FB profile. Of these, the proportion who agreed/strongly agreed was: 57% that the FB group sounded interesting, 45% were interested in being part of it, 41% were willing to share it with others, 62% that it would allow the community’s thoughts/ideas to be heard and 59% wanted to learn about opportunities to participate in research on health topics they care about. Using content analysis, the top 3 health topics people wanted to learn about were chronic disease and prevention, wellness, and mental health. Top ways to keep people engaged were providing personable, relevant health information; and interactive bi-directional discussions. DISCUSSION/SIGNIFICANCE OF IMPACT: Findings will inform development of a FB group to engage diverse populations in biomedical research.