Abstract

Background: Birmingham AIDS Outreach (BAO) is one of three study sites partnering with the University of Pittsburgh Graduate School of Public Health (Pitt Public Health) for a National Institutes of Health–funded randomized controlled trial on a financial management intervention for people with HIV who are experiencing homelessness or housing instability. After the onset of the coronavirus disease 2019 (COVID-19) pandemic in March 2020, the study team used a community-engaged approach to adapt research protocols at this site. We sought to describe a community-engaged approach to restarting National Institutes of Health–funded research during the COVID-19 pandemic.

Methods: Partners at Pitt Public Health and BAO developed a set of agency-wide COVID-19 policies and procedures for BAO organized around Rhodes’ critical elements of community engagement.

Conclusions: The challenges presented by COVID-19 in the research sector have provided an opportunity to reevaluate study activities and increase the extent to which research is conducted in a community-centered manner.

Keywords

HIV, COVID-19, Community health partnerships, Community health services, Power sharing

Given gaps in structural interventions targeting people with HIV (PWH) with economic disadvantage (e.g., those seeking to change environments rather than behaviors), researchers at the University of Pittsburgh Graduate School of Public Health (Pitt Public Health [PPH]) are conducting a National Institutes of Health (NIH)–funded randomized controlled trial to test the effectiveness of a financial management intervention for PWH experiencing homelessness or housing instability on HIV-related outcomes.1 The intervention is based on the representative payee program, a longstanding policy of the U.S. Social Security Administration in which a beneficiary of social security entitlements deemed incapable of managing their own funds is afforded a representative payee to do so on their behalf.2 Client-centered representative payee (CCRP) modifies the traditional model by emphasizing client decision-making and goal-setting while continuing to provide representative payee services to ensure clients’ rent is paid and housing remains stable.2 The CCRP intervention utilizes an organizational representative payee and a case manager, who draws from strength-based approaches, working in unison with the client to meet their financial goals. In a pilot study, investigators found that CCRP may improve adherence to antiretroviral therapy and HIV viral load.3

In 2019, PPH researchers formalized a partnership with a Birmingham, Alabama, community-based organization, Birmingham AIDS Outreach (BAO), as one of three CCRP [End Page 99] study sites. Within this relationship, PPH is the awardee of the NIH grant and developed subawards with each site, including BAO. The subaward was developed by the principal investigator of the grant in collaboration with the financial manager at each site to ensure sufficient funding for the study responsibilities. At BAO, this included full-time coverage for a site champion/social worker and additional effort for the site lead and financial coordinator. Recruitment at the site began in July 2019. The decision to partner with this site was made to improve recruitment outcomes and to enroll a more geographically diverse sample.

In March 2020, the World Health Organization categorized severe acute respiratory syndrome coronavirus 2, the novel coronavirus that causes COVID-19, as a global pandemic. Days later, COVID-19 was declared a national emergency in the United States, and the NIH encouraged their funded studies to “limit study visits to those needed for participant safety” on March 16, 2020.4 The University of Pittsburgh suspended all non-essential research activities on March 20, 2020.5 Nonessential CCRP study activities, including recruitment and enrollment of new participants, were suspended at that time. Study activities such as provision of representative payee services and data collection with current participants were considered essential activities, since halting the intervention would remove access to participants’ entitlements including Supplemental Securities Income. Study activities that continued through the suspension did so with significant methodological adaptation to ensure safety for participants and staff. At the same time, BAO encountered substantial challenges in their provision of services to PWH. As a community-based organization with a history of adapting to the evolving needs of the community, the organization swiftly modified client services, including counseling and legal services, to be completed via teleconferencing and mail, eliminating in-person contact.6

To adapt the study protocol in Birmingham in response to pandemic limitations and to ensure continuity of CCRP services, PPH and BAO initiated a community-engaged approach to strengthen community capacity, including problem-solving capacity, building on Rhodes’ critical elements of community engagement as an organizing framework.7 These processes expanded on the partnership’s existing relationship and further increased equitability in decision-making. Using the experiences and perspectives of both NIH-funded researchers at PPH with program planning and evaluation skills and the community-based team at BAO with experience delivering client services ensured development of a responsible research restart plan.

The challenges presented by different state-and county-level COVID-19 mitigation policies, NIH and PPH guidance regarding research restart, and BAO staff safety policies (e.g., work from home) related to COVID-19 made a community-engaged approach that considered the strengths, needs, and on the ground realities of both partners essential to this work. Herein we describe processes used to restart research during the global pandemic guided by Rhodes’s framework.7 The shared commitment to a community-engaged approach that protects all persons at both sites provided opportunities to implement changes to organizational policies, including an NIH-approved safety protocol implemented agency wide.

OBJECTIVES

Using the critical elements of community engagement and building on pandemic adaptations to client services already enacted by BAO, the aim of this paper is to describe a community-engaged approach to restarting NIH-funded research during COVID-19 balancing client and staff safety and community needs with university expertise and a desire to continue to advance health outcomes research. Other partnerships involving university–community collaborations may learn from our approach, whether to safely resume research activities during future pandemics or inform community-centered research planning efforts. Given community needs frequently change and evolve over time, it is imperative for research entities to have mechanisms to respond to these changing needs. Therefore, this organizing framework has utility even outside of a pandemic context.

METHODS

Restarting Research under COVID-19

The process for restarting the NIH-funded CCRP study involved multiple video conference planning meetings, occurring every two weeks, with members of the academic research team at PPH and staff at BAO. During these meetings, the PPH team explained required university procedures to safely restart [End Page 100] research activities during COVID-19, while BAO representatives described current local conditions “on the ground” and agency protocols adapted to protect the health of staff and clients. These discussions included incorporating vital input from BAO’s community partner board, consisting of BAO staff and representatives from external organizations and the community including PWH, academic partners, and CBOs. During planning meetings, the university–community partnership team developed policies for research restart at BAO that fulfilled PPH and NIH requirements while aligning with BAO operational procedures. BAO and PPH representatives shared updates from their respective organizations and how the pandemic was affecting their local communities, discussed needs of study participants and ways to address those needs, and worked on adapting study procedures. The study PI also kept the team abreast of NIH and university procedures, which changed frequently. Rather than developing policies for BAO specific to the current study, university–community partners developed agency-wide COVID-19 policies and procedures that adapted and, in some cases, expanded on the university’s mandates.

The process of resuming research activities for the academic and community partners was reflective of a true community-engaged process, despite myriad internal and external stressors experienced by both partners resulting from the pandemic. We describe critical elements of community engagement7 with examples of each element and how they pertained to the research restart process. Additional examples of each element are included in Table 1.

Commitment to Engagement: Prioritizing Ethics in Human Subjects Research

Throughout this study and especially in the context of COVID-19 mitigation procedures, we consciously framed our work in alignment with the principle of beneficence, seeking opportunities to maximize benefits for participants and minimize risk of harm. The complex nature of the study and its involvement in managing personal finances required that the intervention continue without interruption so participants would not experience financial or emotional distress due to disruption of services, even as BAO altered operating procedures such that clients could no longer enter BAO facilities due to social distancing imperatives. Thus, while recruitment was temporarily halted, active participants continued their study visits via telephone and were mailed study surveys rather than completing them onsite. A modification was submitted to and approved by the University of Pittsburgh Institutional Review Board (IRB), the reliance single IRB for this study, to ensure remote study activities met expectations for ethical conduct of research with human subjects. This remote arrangement continued for approximately 6 months until BAO determined that an exception to the “no clients in the building” rule during COVID-19 was needed for participants involved in this study, recognizing the unique ethical responsibility to clients involved in representative payee services and the enhanced need for case management.

Commitment to Understanding and Addressing Participant Challenges

While regular in-person contact between study participants and their CCRP case manager was central to the intervention prior to the onset of the pandemic, adherence to health and safety regulations necessitated that all study activities move to a virtual platform during COVID-19. However, due to the limited technological access, the only feasible means of communication with most participants was telephone. Without preexisting rapport between the case manager and participants, this platform change might have been disastrous; however, the case manager had already established a strong rapport with participants. Building on this rapport, the case manager was able to continue working with clients to create budgets and complete bill payment, with community partners helping with utility assistance when bills exceeded monthly payments, and with the Social Security Administration to ensure checks were deposited in a timely manner. In addition, the case manager used the Centers for Disease Control and Prevention social distancing guidelines to provide food box home delivery to mitigate COVID-19 risk for those without personal transportation or who were self-quarantining after an exposure. Maintaining these essential services and the case manager-client rapport upon which they are built was a research restart priority identified by our team.

Partner Flexibility

Flexibility was central to the success of our research restart process and is perhaps the most important principle for informing our community-engaged research restart process. Changes stemming from the emergence of the pandemic were swift, requiring all study partners to be ready and willing to modify procedures rapidly. The university partners exhibited flexibility by intentionally and meaningfully integrating community partner needs into the research [End Page 101]

Table 1. Key Elements of Community-Engaged Research
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Table 1.

Key Elements of Community-Engaged Research

process, including co-creating the COVID-19 policies and procedures research restart guide in partnership with BAO. We highlight this because while intentional collaboration in keeping with Rhodes’ principles is the ideal, it is not always the case in academic–community research relationships. The community partners exhibited flexibility by working to implement rigorous COVID-19 policies upheld by the entire agency, further safeguarding the health and safety of clients [End Page 102] and staff, rather than developing separate procedures specific to the study. Moreover, both partners viewed the COVID-19 policies we created as a living document owing to the rapidly changing nature of the pandemic and university policies, which also required a willingness to be flexible to ongoing change. This ongoing flexibility, facilitated by mutual respect and transparent communication between the university and community partners, speaks to the sustainability of this and other policies involving the PPH/BAO partnership beyond the current pandemic.

Leveraging Resources

Study partners exhibited strong leadership while offering unique strengths. Community partners lent their expertise in forming and maintaining strong relationships with participants and contributing to the accurate dissemination of the research restart experience, while academic partners provided expertise in study fidelity and commitment to community-engaged research. In addition, community partners were able to leverage their expertise in client services by devising an innovative, tailored recruitment process when study recruitment resumed. The use of the BAO waiting room and opportunity to feature study posters on the walls became defunct once clients stopped entering the building; so curbside food box services were used to aid in recruitment. BAO client services staff placed IRB-approved study flyers inside food boxes so all clients receiving food boxes (comprising 99% of clients at the agency) were able to hear about the study through this alternate strategy. While prior to the pandemic we relied on lunch and learn sessions with community partner agencies to build participant referrals, we created virtual information sessions to align with COVID-19 mitigation policies. We also worked with BAO’s existing community partner board, which met once a month via Zoom during the pandemic, to discuss innovative ways to continue recruitment.

The PPH team shared its technological resources and expertise to assist BAO in developing and implementing agency-wide COVID-19 safety procedures. PPH team members created a simple building entry survey to track staff members’ movements between BAO’s three separate buildings to enable contact tracing. A QR code was posted at the entrance of BAO so staff entering the building could quickly scan the code from their phones and complete a COVID-19 screening survey prior to entering. An additional QR code was placed at entrances so staff could complete short self-attestation surveys about any COVID-19 symptoms or recent exposures. PPH’s resource-sharing not only served to implement and regulate COVID-19 safety procedures to ensure alignment with guidelines from PPH and NIH, but also provided BAO with increased means to protect its staff during the pandemic.

Participation of Diverse Sectors

The pause that COVID-19 placed on study activities also engendered opportunities for study partners to reevaluate study processes and materials. For [End Page 103] example, after revisiting the animated recruitment video created before the pandemic, community partners from BAO’s board questioned whether the video was culturally sensitive and gave feedback on how to tailor the video. After the board reviewed the video, they suggested that rather than having a White female explain the study to a Black male potential participant, which could contribute to anti-Black racism, the video should feature two culturally similar peers discussing the study. The academic partners then incorporated these changes into a new animated video voiced by culturally and racially matched local actors. The final version of the video was then approved by the community partner board.

Collaborative Vision and Process

PPH and BAO collaboratively established a clear and intentional mission to equitably approach the research restart process, informed by community members and building on mutual respect and a commitment to transparency. The core tenets of this approach, permeating all research restart decisions, included prioritizing flexibility and the health of clients and staff over study needs. PPH and BAO consistently met every other week (within-group meetings occurred weekly and community partner board meetings occurred monthly) to ensure that this mission directed the research restart process. While the PPH team oversaw logistical aspects of study management and ensured adherence to state and federal regulations, BAO led core implementation procedures on the ground and ensured that the study’s ongoing implementation was informed by community members through monthly discussions with the community partner board about the needs of current and future participants. In this way, partners exerted power in their own spheres of expertise which served to enhance collaboration by averting any territoriality.

Adapting Approaches to Work through Challenges and Embracing Conflict

One of the most significant study challenges occurred when BAO restricted clients from entering their facilities after COVID-19 was declared a pandemic (later, as previously described, study participants were the only exception to this rule and were allowed to resume in-person study activities). This directly impacted data collection, which previously occurred in-person when clients completed scheduled surveys. To adjust to the new circumstances and ensure research continuity, the study partners created a process, in tandem with appropriate IRB approvals, to obtain verbal consent to mail the surveys to participants. Once study recruitment was restarted, BAO increased its social media presence to promote the study and, as previously mentioned, placed recruitment flyers in food boxes that were distributed to clients.

Building a Shared History

Ultimately, BAO and PPH enhanced a successful research partnership during COVID-19, informed by community voices, which may be carried forward into future collaborative endeavors. The research restart process described here, the success of which hinged on a strong partnership between all partner groups, engendered good will and a shared feeling of ownership among team members who worked together throughout to problem-solve.

Process for Article Preparation and Writing

In line with the tenets of community-based participatory research, community and academic partners were mutually involved in developing and writing the article from conceptualization through the final editing stage.811 Three community members representing BAO (the director of research and development, the director of research initiatives, and the CCRP lead social worker) and four academic researchers (including the study and site principal investigators, as well as the research coordinator and graduate student researcher) met three times during the initial planning stage to outline the article. To co-develop content for the article, this group started with a brainstorming activity rooted in human-centered design methods known as affinity clustering.12,13 First, each person in the group worked independently to create notes reflecting important elements of our restarting research processes. One by one, we then took turns describing a note, then placing it on a virtual mural board since all of the meetings took place remotely. As new notes were described, they were placed in proximity to similar ideas. By repeating this process, we identified patterns that aligned with the Rhodes framework and informed the content for this paper. Subsequently, specific writing assignments were allocated based on co-authors’ interests. Throughout this process, the team routinely sought input and direction on article development from the BAO community partner board during monthly meetings where the work was a recurring meeting agenda item. [End Page 104]

We applied Bordeaux et al.’ s guide10 for community-academic partnerships in writing articles about community-based participatory research to guide our research restart process and to ensure equitability among authors’ contributions to this article. These guidelines describe how to equitably include community partners in each phase of the writing process and provided a framework for us to follow. Community partners were given precedence over university partners in choosing which sections to write.

Final Research Restart Organizing Framework

Academic and community partners worked together to brainstorm key elements of the research restart process, organizing our concepts around Rhodes’s 12 critical elements of community engagement.7 Rhodes’s work describes a larger intervention development and implementation process generated over an extended time frame. Because our work described herein details one function of our community-based research study and this work took place over a shortened timeline, we collapsed Rhodes’s 12 critical elements into eight categories (Table 1). The categorization process happened organically using affinity clustering, as described.12,13 Elements that clearly did not apply to our situation were excluded (i.e., “knowledge of and unflagging commitment to community engagement as an approach to reduce local [sexually transmitted disease] disparities”), while others were combined or created to more accurately represent the research process. Table 2 illustrates how our elements compare with our Rhodes.

CONCLUSIONS

While restarting research during the COVID-19 pandemic has presented many challenges to researchers and their community-based study partners, it has also provided opportunities to collectively reevaluate study activities while increasing the extent to which research is conducted with a community-based focus. Building on Rhodes’s 12 critical elements of community engagement and adaptations put in place by BAO’s client services, we described a community-engaged approach to restarting NIH-funded research during the COVID-19 pandemic, the tenets of which may inform other community-engaged research processes. Our process may be applied by other investigators in during future pandemics or any sudden changes that alter communities’ health priorities, underscoring partner flexibility. Moreover, by balancing client and staff safety and needs with the knowledge of university and community expertise, while also engaging community members, we are able to continue health outcomes research. We believe this is the first time these critical elements of community engagement have been adapted, applied for use in a research restart setting, and described in the peer-reviewed literature. While community-engaged research is not a new concept, we believe the rapidity with which our academic and community partners united to reevaluate and retool the study protocol, while weighing national, community, and organizational regulations and staff and participant needs, is novel. Our processes were efficient especially given the extended length of time generally required for establishing strong community partnerships. An indication that our research restart methods met the needs of study participants is reflected in anecdotal evidence from individuals who expressed relief to their case managers that they could easily contact BAO staff as needed, that they remained able to access food boxes and representative payee services, and that rapport with staff was maintained even during social distancing. Multiple participants also expressed relief that COVID-19 mitigation protocols were in place at BAO, making them feel safer when they did enter the building. Furthermore, during this process, no participants withdrew from the study, none lost housing, and we rapidly returned to active recruitment once research restrictions were lifted.

Our study is not without limitations. The partnership described here includes only one community site, so elements of community engagement may not be fully transferable to multisite partnerships. Since the COVID-19 pandemic is still underway, the long-term success of this community engagement approach to research restart is still unknown. Our strategies may translate to research disruptions occurring outside of a pandemic, though here only described our community engagement experiences in restarting research during a global pandemic. Still, results suggest our strategy can withstand the multiple challenges faced by research partnerships during unusual times. Finally, while Rhodes’s framework was useful for conceptualizing our research restart process, other frameworks may provide a better fit. [End Page 105]

Table 2. Adaptation of Rhodes’ Critical Elements of Key Elements of Community-Engaged Research
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Table 2.

Adaptation of Rhodes’ Critical Elements of Key Elements of Community-Engaged Research

[End Page 106]

The community–academic partnership and shared commitment to a community-engaged approach offered protection to all involved in the research and provided opportunities to implement positive changes to organizational policies, including implementation of an agency-wide, NIH-approved safety protocol. Describing the ways community-engaged research may be quickly adapted to meet the evolving community health needs during a public health crisis may provide guidance for future research efforts between academic institutions and CBOs.

Emma Sophia Kay
University of Alabama at Birmingham
Birmingham AIDS Outreach
Stephanie L. Creasy
Behavioral and Community Health Sciences, University of Pittsburgh Graduate School of Public Health
Josh Bruce
Birmingham AIDS Outreach
Abisola Olaniyan
Behavioral and Community Health Sciences, University of Pittsburgh Graduate School of Public Health
Mary Scheinert
Birmingham AIDS Outreach
D. Scott Batey
University of Alabama at Birmingham
Mary Hawk
Behavioral and Community Health Sciences, University of Pittsburgh Graduate School of Public Health
Submitted 24 March 2021, revised 14 February 2022, accepted 20 April 2022.

REFERENCES

1. Olaniyan A, Creasy SL, Batey DS, et al. Protocol of a randomized controlled trial to test the effects of client-centered representative payee services on antiretroviral therapy adherence among marginalized people living with HIV. BMC Public Health. 2020;20(1):1443.

2. Social Security Administration. Training organizational representative payees [updated 2001]. Available from: www.ssa.gov/payee/LessonPlan-2005-2.htm#UNIT2

3. Hawk M, McLaughlin J, Farmartino C, King M, Davis D. The impact of representative payee services on medication adherence among unstably housed people living with HIV/AIDS. AIDS Care. 2016;28(3):384–9.

4. National Institutes of Health. Guidance for NIH-funded clinical trials and human subjects studies affected by COVID-19 [updated 2020]. Available from: https://grants.nih.gov/grants/guide/notice-files/NOT-OD-20-087.html

5. Rutenbar RA, Cudd AE, Levine AS. COVID-19: Reduction in research operations. [updated 2020]. Available from: www.svcresearch.pitt.edu/covid-19-reduction-research-operations

6. Kay ES, Musgrove K. From HIV to coronavirus: AIDS service organizations adaptative responses to COVID-19, Birmingham, Alabama. AIDS Behav. 2020;24:2461–2.

7. Rhodes SD, Daniel-Ulloa J, Wright SS, et al. Critical elements of community engagement to address disparities and related social determinants of health: The Centers of Disease Control and Prevention community approaches to reducing sexually transmitted disease initiative. Sex Transm Dis. 2021;48(1):49–55.

8. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: Assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19: 173–202.

9. Minkler M. Community-based research partnerships: challenges and opportunities. J Urban Health. 2005;82(2 Suppl 2): ii3–ii12.

10. Bordeaux BC, Wiley C, Tandon SD, Horowitz CR, Brown PB, Bass EB. Guidelines for writing manuscripts about community-based participatory research for peer-reviewed journals. Prog Community Health Partnersh. 2007;1(3):281–8.

11. Wallerstein NB, Duran B. Using community-based participa-tory research to address health disparities. Health Promotion Practice. 2006;7(3):312–23.

12. Maguire M. Methods to support human-centred design. Int J Hum Comput Stud. 2001;55(4):587–34.

13. Luma Institute. Innovating for people: Handbook of human-centered design methods. Pittsburgh: Luma Institute, LLC; 2012.

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