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CommunityRx (CRx), an information technology intervention, provides patients with a personalized list of healthful community resources (HealtheRx). In repeated clinical studies, nearly half of those who received clinical "doses" of the HealtheRx shared their information with others ("social doses"). Clinical trial design cannot fully capture the impact of information diffusion, which can act as a force multiplier for the intervention. Furthermore, experimentation is needed to understand how intervention delivery can optimize social spread under varying circumstances. To study information diffusion from CRx under varying conditions, we built an agent-based model (ABM). This study describes the model building process and illustrates how an ABM provides insight about information diffusion through in silico experimentation. To build the ABM, we constructed a synthetic population ("agents") using publicly-available data sources. Using clinical trial data, we developed empirically-informed processes simulating agent activities, resource knowledge evolution and information sharing. Using RepastHPC and chiSIM software, we replicated the intervention in silico, simulated information diffusion processes, and generated emergent information diffusion networks. The CRx ABM was calibrated using empirical data to replicate the CRx intervention in silico. We used the ABM to quantify information spread via social versus clinical dosing then conducted information diffusion experiments, comparing the social dosing effect of the intervention when delivered by physicians, nurses or clinical clerks. The synthetic population (N = 802,191) exhibited diverse behavioral characteristics, including activity and knowledge evolution patterns. In silico delivery of the intervention was replicated with high fidelity. Large-scale information diffusion networks emerged among agents exchanging resource information. Varying the propensity for information exchange resulted in networks with different topological characteristics. Community resource information spread via social dosing was nearly 4 fold that from clinical dosing alone and did not vary by delivery mode. This study, using CRx as an example, demonstrates the process of building and experimenting with an ABM to study information diffusion from, and the population-level impact of, a clinical information-based intervention. While the focus of the CRx ABM is to recreate the CRx intervention in silico, the general process of model building, and computational experimentation presented is generalizable to other large-scale ABMs of information diffusion.

Background: Every year, more than 90,000 U.S. women undergo mastectomy. More than 40% have reconstruction. Following reconstruction, most women experience persistent partial or complete numbness of the reconstructed breasts, and many experience pain. Yet, breast reconstruction procedures focus largely on esthetic outcomes with mixed impact on sensory outcomes and little attention to pain. This study examines whether and how breast sensation is important to women. Materials and Methods: Conventional content analysis of extant qualitative data from a clinical registry (29 women with prior breast surgery for cancer, 2008?2022), a volunteer community sample (qualitative interviews with 6 women with and 5 without breast cancer, 2019), and from a Twitter social media survey (N?=?32, 2022). Results: Functions of the breast identified by women with and without cancer include breastfeeding, sexual function, and femininity. Five interrelated themes on the importance of breast sensation emerged among women with breast cancer history: sexual function, experience of partnered sex or relationship with one's sexual partner, breast embodiment, effect of breast pain on sexual function, and importance to psychological wellbeing. Women, advocates, and clinicians described a lack of patient?physician communication in this domain that exacerbates the negative impact of breast sensation loss on health and wellbeing. Conclusions: Breast sensation is important to women following mastectomy, yet a gap exists in patient?physician communication about the impact of mastectomy and reconstruction on breast sensory function. Lessons for physicians, scientists, and skeptics are conveyed about why the basic integrity of women's bodies matters for practice and science.

Abstract Background CommunityRx 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 findings CommunityRx 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. Discussion Our 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 registration ClinicalTrials.gov: CommunityRx-Hunger (NCT04171999, 11/21/2019); CommunityRx for Caregivers (NCT04146545, 10/31/2019).

Abstract Background African 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. Methods Using 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. Results Most 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. Conclusions African 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.

Objectives: 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., Methods: 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., Results: 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., Conclusions: 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., Trial Registration: ClinicalTrials.gov Identifier: NCT02435511.