Community Resource Referral Research Articles

CommunityRx, a social care assistance intervention for family and friend caregivers delivered at the point of care: two concurrent blinded randomized controlled trials

BackgroundCommunityRx is an evidence-based social care intervention delivered to family and friend caregivers (“caregivers”) at the point of healthcare to address health-related social risks (HRSRs). Two CommunityRx randomized controlled trials (RCTs) are being fielded concurrently on Chicago’s South Side, a predominantly African American/Black community. CommunityRx-Hunger is a double-blind RCT enrolling caregivers of hospitalized children. CommunityRx-Dementia is a single-blind RCT enrolling caregivers of community-residing people with dementia. RCTs with caregivers face recruitment barriers, including caregiver burden and lack of systematic strategies to identify caregivers in clinical settings. COVID-19 pandemic-related visitor restrictions exacerbated these barriers and prompted the need for iteration of the protocols from in-person to remote operations. This study describes these protocols and methods used for successful iteration to overcome barriers.Methods and findingsCommunityRx uses individual-level data to generate personalized, local community resource referrals for basic, health and caregiving needs. In early 2020, two in-person RCT protocols were pre-tested. In March 2020, when pandemic conditions prohibited face-to-face clinical enrollment, both protocols were iterated to efficient, caregiver-centered remote operations. Iterations were enabled in part by the Automated Randomized Controlled Trial Information-Communication System (ARCTICS), a trial management system innovation engineered to integrate the data collection database (REDCap) with community resource referral (NowPow) and SMS texting (Mosio) platforms. Enabled by engaged Community Advisory Boards and ARCTICS, both RCTs quickly adapted to remote operations. To accommodate these adaptations, launch was delayed until November (CommunityRx-Hunger) and December (CommunityRx-Dementia) 2020. Despite the delay, 65% of all planned participants (CommunityRx-Hunger n = 417/640; CommunityRx-Dementia n = 222/344) were enrolled by December 2021, halfway through our projected enrollment timeline. Both trials enrolled 13% more participants in the first 12 months than originally projected for in-person enrollment.DiscussionOur asset-based, community-engaged approach combined with widely accessible institutional and commercial information technologies facilitated rapid migration of in-person trials to remote operations. Remote or hybrid RCT designs for social care interventions may be a viable, scalable alternative to in-person recruitment and intervention delivery protocols, particularly for caregivers and other groups that are under-represented in traditional health services research.Trial registrationClinicalTrials.gov: CommunityRx-Hunger (NCT04171999, 11/21/2019); CommunityRx for Caregivers (NCT04146545, 10/31/2019).

Family Caregiver Experiences in the Inpatient and Outpatient Reduced-Intensity Conditioning Allogeneic Hematopoietic Cell Transplantation Settings: A Qualitative Study

Caregivers (ie, family and friends) are essential in providing care and support for patients undergoing hematopoietic cell transplantation (HCT) and throughout their recovery. Traditionally delivered in the hospital, HCT is being increasingly provided in the outpatient setting, potentially heightening the burden on caregivers. Extensive work has examined the inpatient HCT caregiving experience, yet little is known about how caregiver experiences may differ based on whether the HCT was delivered on an inpatient or outpatient basis, particularly during the acute recovery period post-HCT. This study explored the similarities and differences in caregiver experiences in the inpatient and outpatient settings during the early recovery from reduced-intensity conditioning (RIC) allogeneic HCT. We conducted semistructured interviews (n = 15) with caregivers of adults undergoing RIC allogeneic HCT as either an inpatient (n = 7) or an outpatient (n = 8). We recruited caregivers using purposeful criterion sampling, based on the HCT setting, until thematic saturation occurred. Interview recordings were transcribed and coded through thematic analysis using Dedoose v.9.0. The study analysis was guided by the transactional model of stress and coping and the model of adaptation of family caregivers during the acute phase of BMT. Three themes emerged to describe similar experiences for HCT caregivers regardless of setting: (1) caregivers reported feeling like they were a necessary yet invisible part of the care team; (2) caregivers described learning to adapt to changing situations and varying patient needs; and (3) caregivers recounted how the uncertainty following HCT felt like existing between life and death while also maintaining a sense of gratitude and hope for the future. Caregivers also reported distinct experiences based on the transplantation setting and 4 themes emerged: (1) disrupted routines: inpatient caregivers reported disrupted routines when caring for the HCT recipient while simultaneously trying to manage non-caregiving responsibilities at home and work, and outpatient caregivers reported having to establish new routines that included frequent clinic visits with the patient while altering or pausing home and work responsibilities; (2) timing of caregiver involvement: inpatient caregivers felt more involved in care after the patient was discharged from the HCT hospitalization, whereas outpatient caregivers were already providing the majority of care earlier in the post-transplantation period; (3) fear of missing vital information: inpatient caregivers worried about missing vital information about the patient's care and progress if not physically present in the hospital, whereas outpatient caregivers feared overlooking vital information that may warrant contacting the care team as they monitored the patient at home; and (4) perceived adequacy of resources to meet psychosocial and practical needs: inpatient caregivers reported having adequate access to resources (ie, hospital-based services), whereas outpatient caregivers felt they had more limited access and needed to be resourceful in seeking out assistance. Inpatient and outpatient HCT caregivers described both similar and distinct experiences during the acute recovery period post-HCT. Specific interventions should address caregiver psychosocial needs (ie, distress, illness uncertainty, communication, and coping) and practical needs (ie, community resource referral, preparedness for home-based caregiving, and transplantation education) of HCT caregivers based on setting.

If you build it, they may not come: Understanding factors influencing use of a community resource referral technology.

Identify factors affecting the use of a community resource referral platform among local community-based organizations (CBOs) and test strategies to increase platform use. Data sources included platform usage data and semi-structured interviews. The study took place in a small city in the Northeastern United States from 2020 to 2022. We analyzed platform data and conducted interviews with local organizations and organizations in other communities to understand barriers to CBOs' use of the referral platform and identify strategies that might increase use. We then tested 4 strategies and assessed impacts via time trend analysis of platform usage and qualitative interviews. Platform usage data were obtained from the platform. Semi-structured interviews were conducted with staff and leaders of 36 local CBOs and 9 external organizations. Four years after launch, platform use remained relatively low. None of the tested strategies (data insight reports, a referral hub, tailored training, and a communication campaign) noticeably increased platform use. The main barrier to the use of the platform was the lack of perceived usefulness, mostly because existing processes for identifying resources and referring clients worked well enough and because many organizations were already required to use a client management or referral tool. Additional barriers included the lack of comfort with and, in some cases, active dislike of e-referrals, and lack of comfort with technology tools overall. Organizations that were most likely to find the platform useful and to use it were those that provided referrals for a wide range of needs and whose staff were not already familiar with local resources. Organizations seeking to implement referral platforms should not assume that local CBOs will automatically take up these platforms. For these platforms to succeed, much more attention needs to be paid to ensuring the platforms provide value to the CBOs they seek to engage.

Implementation of Social Isolation Screening and an Integrated Community Resource Referral Platform.

Screening and referral programs for social isolation and loneliness in older patients increased during the COVID-19 pandemic in primary care settings to mitigate associated adverse health outcomes. This study explores community health centers' experiences implementing a social isolation and loneliness screening program involving a community resource referral platform integrated into the electronic health record to support referrals. A formative mixed methods evaluation in 4 community health centers. Semistructured interviews, observation of implementation meetings, facilitated group discussions, surveys, and utilization data extracted from the electronic health record and community resource referral platform were collected and analyzed concurrently. Screening for social isolation and loneliness can heighten health center staff knowledge and prioritization of socially isolated older patients. Participants indicate using an integrated community resource referral platform may only be useful in certain circumstances, particularly for those located outside urban areas. The experiences of these health centers indicate that when implementing interventions to mitigate patients' social isolation and loneliness, it is necessary to consider other resource directories, needed adjustments to referral and documentation workflows, and potential impacts on patients and care teams. Screening older patients for social isolation could increase care team awareness of social risk; assistance related referral options should be considered carefully.

Experiences and Perspectives on Adopting New Practices for Social Needs‐Targeted Care in Safety‐Net Settings: A Qualitative Case‐Comparison Study

Research ObjectiveThe purpose of this qualitative study was to describe the current practice of social needs‐targeted care in three Texas safety net clinics, and facilitators and barriers to adopting new social needs‐targeted care tools and practices.Study DesignThis qualitative, case‐comparison study used data from with staff at three safety net clinics serving small and mid‐sized communities. Analysis focused on perspectives and decisions around adopting new tools or practices related to social needs‐targeted care, including standardized screening tools and community resource referral platforms.Population StudiedNine staff across three organizations were interviewed. Organization A is a five‐clinic FQHC serving two rural communities. Organization B is an independent pediatric clinic that provides medical and dental care from birth to age 21, in a mid‐sized community. Organization C is an FQHC with 12 sites serving small and mid‐sized communities. All three served patients regardless of their ability to pay.Principal FindingsOrganizations B and C were currently using a standard social needs screening tool in their routine practice, and organization A was considering doing so. Organization C had adopted a community resource referral platform in partnership with a large community collaboration. The three case studies illustrate a range of facilitators, barriers, perceived benefits, and drawbacks influencing social needs‐targeted practices.Beyond the potential usefulness of social needs screening tools to help facilitate social needs‐targeted care, interviewees from all three organizations mentioned their potential value to create aggregated social needs data to understand community problems. Drawbacks include concerns about data privacy.Community resource referral platforms were seen as valuable for creating accountability, but required an influential community partner and adequate community resources. The most salient theme related to referral platform adoption was the importance of the community context, or outer setting. Clinics can play a leadership role, but cannot establish a referral platform without a larger community coalition or organizing force and well‐resourced community partners. The CEO from Organization A did not think their community social service organizations had the technological or staffing capacity to participate in a referral platform. The pediatrician interviewed from Organization B felt her clinic wasn't influential enough to get the needed buy‐in from all the community partners.Concerns about disempowering clients and blurring roles by providing social needs‐targeted care and unintentionally disempowering clients were also voiced, and the potential beneficial impact on provider job satisfaction with an effective system for social needs‐targeted care provision in place was identified.ConclusionsBenefits and drawbacks of adopting new tools and practices related to social needs‐targeted care are strongly influenced by the community context. For the adoption of community resource referral platforms, the outer setting is particularly relevant. While screening tools are much easier than referral platforms to adopt, the ability of a clinic to address identified needs remains heavily based on the outer setting.Implications for Policy or PracticeAdoption readiness related to social needs‐targeted care interventions should be assessed at the community or regional level in addition to the clinic system level, and implementation may be most effective at a community or regional level.Primary Funding SourceEpiscopal Health Foundation.

Using Social Determinants Screening/Mapping Tools to Identify Needs and Resources for Student-Run Free Clinic Patients

Background: Social determinants of health have been well accepted as contributing to health outcomes. They are a vital aspect of health care delivery and must be a consideration, especially among free clinic populations. Social determinants of health have also become a required element of medical school curricula. The Student Outreach to Area Residents Student-Run Free Clinic based out of Northeast Ohio Medical University piloted a student-led program that implemented social determinants of health screening and community resource referral as a part of integrated health care delivery for all its patients. Methods: We described the development of a screening tool, protocol, and creation of community resource referral materials. We also described the tracking of patient-reported needs and mapping of location and accessibility of community resources. One hundred patients were surveyed through convenience sampling, and results were used for program improvement. Results/Conclusion: After collecting and analyzing survey results, it was found that the 2 most frequently requested determinants were mental health and utilities services, and the most available community resource was emergency food services. We also mapped these results by zip code and found gaps between need and distribution of services. We demonstrated the utility of mapping to identify points of improvement for the future. We also provided lessons learned related to effective social determinants of health screening, community resource referral, and overall program implementation in student-run free clinics. We further explained the benefits of including similar student-led programs as a way for students to gain practical experience related to social determinants of health.

CommunityRx: Optimizing a Community Resource Referral Intervention for Minority Dementia Caregivers.

Community resource referral systems have been implemented into care settings that serve persons with dementia but with little input from caregivers. Focus groups were conducted with African American, Hispanic, and Asian caregivers to describe their preferences for community resource referral information. Caregivers discussed the significance of a community resource list for dementia caregiving and self-care and articulated strategies for effective information delivery during a medical visit. Most caregivers acknowledged that resource needs change with progression of dementia, but no patterns emerged with regard to preference for information delivered incrementally based on disease stage or all at once. Hispanic and Asian caregivers felt that resource information should specify service providers' language and cultural capabilities. All caregivers agreed that delivery by a member of the care team with knowledge of dementia-specific resources would be most effective. Optimal delivery of community resource referrals is caregiver-centered and customizable to individual and subgroup preferences.

Experiences and Perspectives on Adopting New Practices for Social Needs-targeted Care in Safety-net Settings: A Qualitative Case Series Study.

IntroductionClinical settings are being encouraged to identify and address patients’ social needs within the clinic or through partner organizations. The purpose of this qualitative study was to describe the current practice of social needs-targeted care in 3 Texas safety net clinics, and facilitators and barriers to adopting new social needs-targeted care tools and practices.MethodsInterviews were conducted with staff at 3 safety net clinics serving small and mid-sized communities. Analysis focused on perspectives and decisions around adopting new tools or practices related to social needs-targeted care, including standardized screening tools and community resource referral platforms.ResultsNine staff across 3 organizations were interviewed. Two organizations were currently using a standard social needs screening tool in their routine practice, and a third was considering doing so. One organization had adopted a community resource referral platform in partnership with a large community collaboration. Three case studies illustrate a range of facilitators, barriers, perceived benefits, and drawbacks influencing social needs-targeted practices. Benefits of systematic data collection on social needs included the generation of data for community action. Drawbacks include concerns about data privacy. Community resource referral platforms were seen as valuable for creating accountability, but required an influential community partner and adequate community resources. Concerns about disempowering clients and blurring roles were voiced, and potential to increase provider job satisfaction was identified.ConclusionsBenefits and drawbacks of adopting new tools and practices related to social needs-targeted care are strongly influenced by the community context. For the adoption of community resource referral platforms, the outer setting is particularly relevant; adoption readiness is best assessed at the community or regional level rather than the clinic system level. While screening tools are much easier than referral platforms for clinics to adopt, the ability to address identified needs remains heavily based on the outer setting.

A Community Resource Referral Intervention for Informal Caregivers of People With Dementia

The National Alzheimer’s Project Act (PL-111-375) calls for connecting dementia caregivers to community resources, but few caregiver interventions have focused on this component of support. CRx-D is a theory-driven, scalable intervention that addresses common caregiver needs through: (1) education to normalize needs, (2) coaching on resource activation and (3) tools to promote access, including a printed list of nearby resources (“HealtheRx-D”), an online resource finder, proactive and ongoing text message support. We pretested the intervention arm of CRx-D among 10 caregivers of PWD to assess appropriateness, feasibility and fidelity. Patients presenting for care at 3 outpatient clinics were screened for eligibility, enrolled and given the intervention (12/19-01/20). Of 1,038 patients approached, 12 were caregivers of PWD; 10/12 met all eligibility criteria. All 10 eligible caregivers were enrolled in the study. Caregivers were, on average, 49 years old (range, 29-65), primarily female (n=8), Black/African American (n=9), and half were children of PWD (n=5). At baseline, several caregivers indicated unmet caregiving or health needs (caregiving education [n=7], free/affordable meals [n=5] and financial assistance [n=5]) indicating the intervention’s appropriateness. Intervention components were delivered as intended to all caregivers, although one caregiver provided a landline so could not receive texts. A scalable resource referral intervention for caregivers is appropriate. Delivery is feasible with high fidelity. Identifying caregivers at the point of their own healthcare requires high volume screening. These findings will inform a randomized controlled trial of 344 caregivers of PWD to evaluate the impact of CRx-D on caregiver self-efficacy and satisfaction with care.

Implementation of Community-Based Resource Referrals for Cardiovascular Disease Self-Management.

Describe primary care practices' implementation of CommunityRx-H3, a community resource referral intervention that utilized practice facilitators to support cardiovascular disease (CVD) prevention quality improvement. Qualitative focus groups were conducted with practice facilitators to elicit perceptions of practices' experiences with CommunityRx-H3, practice-level factors affecting, and practice facilitator strategies to promote implementation. Qualitative data were analyzed using directed content analysis. The Consolidated Framework for Implementation Research was applied deductively to organize and interpret findings. Fourteen of all 19 practice facilitators participated. Practice facilitators perceived that staff attitudes about connecting patients to community resources for CVD were largely positive. Practices were already using a range of non-systematic strategies to refer to community resources. Practice-level factors that facilitated CommunityRx-H3 implementation included clinician "champions," engaged practice managers, and a practice culture that valued community resources. Implementation barriers included a practice's unwillingness to integrate the intervention into existing workflows, limited staff capacity to complete the resource inventory, and unavailability or cost of materials needed to print the resource referral list ("HealtheRx-H3"). Practice facilitator strategies to promote implementation included supporting ongoing customization of the HealtheRx-H3 and material support. Practice facilitators felt implementation would be improved by integration of CommunityRx-H3 with electronic medical record workflows and alternative methods for engaging practices in the implementation process. Practice facilitators are increasingly being utilized by primary care practices to support quality improvement interventions and, as shown here, can also play an important role in implementation science. This study yields insights to improve implementation of community resource referral solutions to support primary care CVD prevention efforts.

Implementing Community Resource Referral Technology: Facilitators And Barriers Described By Early Adopters.

Health care organizations are increasingly implementing programs to address patients' social conditions. To support these efforts, new technology platforms have emerged to facilitate referrals to community social services organizations. To understand the functionalities of these platforms and identify the lessons learned by their early adopters in health care, we reviewed nine platforms that were on the market in 2018 and interviewed representatives from thirty-five early-adopter health care organizations. We identified key informants through solicited expert recommendations and web searches. With minor variations, all platforms in the sample provided similar core functionalities: screening for social risks, a resource directory, referral management, care coordination, privacy protection, systems integration, and reporting and analytics. Early adopters reported three key implementation challenges: engaging community partners, managing internal change processes, and ensuring compliance with privacy regulations. We conclude that early engagement with social services partners, funding models that support both direct and indirect costs, and stronger evidence of effectiveness together could help advance platform adoption.

Implementation of Systematic Community Resource Referrals at Small Primary Care Practices to Promote Cardiovascular Disease Self-Management.

Quality improvement (QI) models and evidence-based self-management guidelines for reducing cardiovascular disease (CVD) risk require patients to access community resources. The purpose of this study is to describe outcomes from implementation of a community resource referral system into small clinical practices to reduce CVD risk. Practices were given the opportunity to complete an inventory of local CVD-related resources; these data were used to create a printed list of resources for patients ("HealtheRx-H3"). Practices could request updates to HealtheRx-H3s. We assessed implementation outcomes, including appropriateness, feasibility, and adoption. Practice populations were at high risk for CVD. It was feasible to create practice-specific HealtheRx-H3s. Systematic distribution of HealtheRx-H3s using digital electronic health record (EHR) integration was infeasible due to inconsistent use of EHR systems, workflow variation, and lacking data-sharing infrastructure. Of 76 practices, 38 completed the inventory; completion was similar by patient and practice characteristics. HealtheRx-H3 updates were requested by 39% of practices; practices that completed the inventory were significantly more likely to request an update compared with those that did not (61% vs. 18%, p-value <.01). Successful implementation of QI strategies to systematize community resource referral solutions is feasible at small practices, but more research is needed to understand what motivates small practices to participate in implementation of these solutions.

Community resource referral needs among African American dementia caregivers in an urban community: a qualitative study

BackgroundAfrican American caregivers of community-residing persons with dementia are mostly unpaid and have high rates of unmet basic and health needs. The National Alzheimer’s Project Act (NAPA) mandates improved coordination of care for persons with dementia and calls for special attention to racial populations at higher risk for Alzheimer’s Disease or related dementias (ADRD) to decrease health disparities. The purpose of this study is to describe the perceptions of African American caregivers of people with dementia about community resources needed to support caregiving as well as their own self-care.MethodsUsing a qualitative study design, in-depth, semi-structured qualitative interviews were conducted with caregivers (N = 13) at an urban geriatric clinic to elicit community resource needs, barriers to and facilitators of resource use and how to optimize clinical referrals to community resources. Caregivers were shown a community resource referral list (“HealtheRx”) developed for people with dementia and were queried to elicit relevance, gaps and insights to inform delivery of this information in the healthcare setting. Data were iteratively coded and analyzed using directed content analysis. Results represent key themes.ResultsMost caregivers were women (n = 10, 77%) and offspring (n = 8, 62%) of the person with dementia. Community resource needs of these caregivers included social, entertainment, personal self-care and hospice services. Main barriers to resource use were the inability to leave the person with dementia unsupervised and the care recipient’s disinterest in participating in their own self-care. Facilitators of resource use included shared caregiving responsibility and learning about resources from trusted sources. To optimize clinical referrals to resources, caregivers wanted specific eligibility criteria and an indicator of dementia care capability.ConclusionsAfrican American caregivers in this study identified ways in which community resource referrals by clinicians can be improved to meet their caregiving and self-care needs.

CommunityRx: A Real-World Controlled Clinical Trial of a Scalable, Low-Intensity Community Resource Referral Intervention.

To test the effect of CommunityRx, a scalable, low-intensity intervention that matches patients to community resources, on mental health-related quality of life (HRQOL) (primary outcome), physical HRQOL, and confidence in finding resources. A real-world trial assigned publicly insured residents of Chicago, Illinois, aged 45 to 74 years to an intervention (n = 209) or control (n = 202) group by alternating calendar week, December 2015 to August 2016. Intervention group participants received usual care and an electronic medical record-generated, personalized list of community resources. Surveys (baseline, 1-week, 1- and 3-months) measured HRQOL and confidence in finding community resources to manage health. At 3 months, there was no difference between groups in mental (-1.03; 95% confidence interval [CI] = -3.02, 0.96) or physical HRQOL (0.59; 95% CI = -0.98, 2.16). Confidence in finding resources was higher in the intervention group (odds ratio = 2.08; 95% CI = 1.18, 3.63); the effect increased at each successive time point. Among intervention group participants, 65% recalled receiving the intervention; 48% shared community resource information with others. CommunityRx did not increase HRQOL, but its positive effect on confidence in finding resources for self-care suggests that this low-intensity intervention may have a role in population health promotion. ClinicalTrials.gov Identifier: NCT02435511.

Primary Care Physicians' Dementia Care Practices: Evidence of Geographic Variation

This article explores primary care physicians' (PCPs) self-reported approaches and barriers to management of patients with dementia, with a focus on comparisons in dementia care practices between PCPs in 2 states. In this cross-sectional study, questionnaires were mailed to 600 randomly selected licensed PCPs in Connecticut and to all 1,017 licensed PCPs in Maine. A total of 422 eligible PCPs responded. Nearly 90% of PCPs prescribed donepezil in the previous year for their dementia patients. Connecticut PCPs were more likely to prescribe several other therapeutics than their Maine counterparts. Connecticut PCPs were more likely to refer dementia patients to adult day care (85% vs. 59%) but less likely to refer to Area Agencies on Aging (21% vs. 44%; both ps < .05); referral rates to Alzheimer's Association chapters were low in both states (30%). A greater proportion of Connecticut PCPs reported barriers to optimal dementia care, including time constraints (54% vs. 31% of Maine PCPs), unfamiliarity with community resources (46% vs. 30%), and reimbursement constraints (45% vs. 23%; all ps <or= .05). Two thirds of PCPs were "very" or "somewhat" interested in using information technology to assist with dementia diagnosis and management; controlling for other variables, youngest PCPs were more than twice as likely as oldest to profess such interest (adjusted odds ratio = 2.04; 95% confidence interval [CI] = 1.02-4.08). Geographic variations are evident in PCP medication prescription patterns, community resource referral patterns, and reported barriers to optimal dementia care. Younger PCPs are more likely to adopt information technology to assist in dementia diagnosis and management.