Caregivers' and providers' perspectives of social and medical care after pediatric liver transplant: Results from the multicenter SOCIAL-Tx study.

Disparities exist in pediatric liver transplant (LT). We characterized barriers and facilitators to providing transplant and social care within pediatric LT clinics. This was a multicenter qualitative study. We oversampled caregivers reporting household financial strain, material economic hardship, or demonstrating poor health literacy. We also enrolled transplant team members. We conducted semistructured interviews with participants. Caregiver interviews focused on challenges addressing transplant and household needs. Transplant provider interviews focused on barriers and facilitators to providing social care within transplant teams. Interviews were recorded, transcribed, and coded according to the Capability, Opportunity, Motivation-Behavior model. We interviewed 27 caregivers and 27 transplant team members. Fifty-two percent of caregivers reported a household income <$60,000, and 62% reported financial resource strain. Caregivers reported experiencing (1) high financial burdens after LT, (2) added caregiving labor that compounds the financial burden, (3) dependency on their social network's generosity for financial and logistical support, and (4) additional support being limited to the perioperative period. Transplant providers reported (1) relying on the pretransplant psychosocial assessment for identifying social risks, (2) discomfort initiating social risk discussions in the post-transplant period, (3) reliance on social workers to address new social risks, and (4) social workers feeling overburdened by quantity and quality of the social work referrals. We identified barriers to providing effective social care in pediatric LT, primarily a lack of comfort in assessing and addressing new social risks in the post-transplant period. Addressing these barriers should enhance social care delivery and improve outcomes for these children.

Patient Acceptability of Telehealth Medication Abortion Care in the United States, 2021‒2022: A Cohort Study.

Objectives. Despite the recent expansion of direct-to-patient telehealth abortion care in the United States, patient experiences with the service are not well understood. Methods. We described care experiences of 1600 telehealth abortion patients in 2021 to 2022 and used logistic regression to explore differences by race or ethnicity and between synchronous (phone or video) and asynchronous (secure messaging) telehealth abortion care. Results. Most patients trusted the provider (98%), felt telehealth was the right decision (96%), felt cared for (92%), and were very satisfied (89%). Patients most commonly cited privacy (76%), timeliness (74%), and staying at home (71%) as benefits. The most commonly reported drawback was initial uncertainty about whether the service was legitimate (38%). Asian patients were less likely to be very satisfied than White patients (79% vs 90%; P = .008). Acceptability was high for both synchronous and asynchronous care. Conclusions. Telehealth abortion care is highly acceptable, and benefits include privacy and expediency. Public Health Implications. Telehealth abortion can expand abortion access in an increasingly restricted landscape while maintaining patient-centered care. (Am J Public Health. 2024;114(2):241-250. https://doi.org/10.2105/AJPH.2023.307437).

Multilevel Determinants of Digital Health Equity: A Literature Synthesis to Advance the Field.

Current digital health approaches have not engaged diverse end users or reduced health or health care inequities, despite their promise to deliver more tailored and personalized support to individuals at the right time and the right place. To achieve digital health equity, we must refocus our attention on the current state of digital health uptake and use across the policy, system, community, individual, and intervention levels. We focus here on (a) outlining a multilevel framework underlying digital health equity; (b) summarizingfive types of interventions/programs (with example studies) that hold promise for advancing digital health equity; and (c) recommending future steps for improving policy, practice, and research in this space.

Racial/ethnic disparities in wait-list outcomes are only partly explained by socioeconomic deprivation among children awaiting liver transplantation.

BACKGROUND AND AIMS: Racial/ethnic minority children have worse liver transplant (LT) outcomes. We evaluated whether neighborhood socioeconomic deprivation affected associations between race/ethnicity and wait-list mortality. APPROACH AND RESULTS: We included children (age <18) listed 2005-2015 in the Scientific Registry of Transplant Recipients. We categorized patients as non-Hispanic White, Black, Hispanic, and other. We matched patient ZIP codes to a neighborhood socioeconomic deprivation index (range, 0-1; higher values indicate worse deprivation). Primary outcomes were wait-list mortality, defined as death/delisting for too sick, and receipt of living donor liver transplant (LDLT). Competing risk analyses modeled the association between race/ethnicity and wait-list mortality, with deceased donor liver transplant (DDLT) and LDLT as competing risks, and race/ethnicity and LDLT, with wait-list mortality and DDLT as competing risks. Of 7716 children, 17% and 24% identified as Black and Hispanic, respectively. Compared to White children, Black and Hispanic children had increased unadjusted hazard of wait-list mortality (subhazard ratio [sHR], 1.44; 95% CI, 1.18, 1.75 and sHR, 1.48; 95% CI, 1.25, 1.76, respectively). After adjusting for neighborhood deprivation, insurance, and listing laboratory Model for End-Stage Liver Disease/Pediatric End-Stage Liver Disease, Black and Hispanic children did not have increased hazard of wait-list mortality (sHR, 1.12; 95% CI, 0.91, 1.39 and sHR, 1.21; 95% CI, 1.00, 1.47, respectively). Similarly, Black and Hispanic children had a decreased likelihood of LDLT (sHR, 0.58; 95% CI, 0.45, 0.75 and sHR, 0.61; 95% CI, 0.49, 0.75, respectively). Adjustment attenuated the effect of Black and Hispanic race/ethnicity on likelihood of LDLT (sHR, 0.79; 95% CI, 0.60, 1.02 and sHR, 0.89; 95% CI, 0.70, 1.11, respectively). CONCLUSIONS: Household and neighborhood socioeconomic factors and disease severity at wait-list entry help explain racial/ethnic disparities for children awaiting transplant. A nuanced understanding of how social adversity contributes to wait-list outcomes may inform strategies to improve outcomes.

Impacts of Individual Patient Language and Neighborhood Ethnic Enclave on COVID-19 Test Positivity Among Hispanic/Latinx Patients in San Francisco.

BACKGROUND: Given the known disparities in COVID-19 within the Hispanic/Latinx community, we sought to examine the interaction between individual-level and neighborhood-level social determinants of health using linked electronic health record data. METHODS: We examined electronic health record data linked to neighborhood data among Hispanic/Latinx patients tested for COVID-19 between March 1, 2020, and February 28, 2021, from 2 large health care systems in San Francisco. Hispanic/Latinx ethnic enclave is measured using an index of census-tract level indicators of ethnicity, nativity, and language. Multilevel logistic regression models examined associations between ethnic enclave and COVID-19 positivity (COVID-19+), adjusting for patient-level sociodemographic and clinical characteristics and health system. Cross-level interactions were used to test whether associations between ethnic enclave and COVID-19+ differed by patient language preference. RESULTS: Among 26,871 patients, mean age was 37 years, 56% had Spanish-language preference, and 21% were COVID-19+. In unadjusted models, patients living in the highest versus lowest Hispanic/Latinx enclave had 3.2 higher odds of COVID-19+ (95% CI, 2.45-4.24). Adjusted, the relationship between ethnic enclave and COVID-19+ was attenuated, but not eliminated (odds ratio: 1.4; 95% CI, 1.13-1.17). Our results demonstrated a significant cross-level interaction, such that the influence of ethnic enclave was modified by patient language preference. For individuals with Spanish-language preference, risk of COVID-19+ was high regardless of neighborhood context, whereas for those with English preference, neighborhood ethnic enclave more than doubled the odds of infection. CONCLUSIONS: Findings suggest that a multilevel and intersectional approach to the study of COVID-19 inequities may illuminate dimensions of health inequity that affect marginalized communities and offer insights for targeted clinical and community-based interventions.

Language-Specific Challenges and Solutions for Equitable Telemedicine Implementation in the Primary Care Safety Net During COVID-19.

PURPOSE: Telemedicine care dramatically expanded during the COVID-19 pandemic. We characterized facilitators and barriers to telemedicine implementation among safety-net primary care clinics serving patients with limited English proficiency (LEP). METHODS: We collected data on telemedicine volume and patient demographics among safety-net clinics participating in a telemedicine learning collaborative. Data on various metrics were reported to the collaborative from February 2019 through August 2021. We conducted semi-structured interviews with clinical and quality leaders, purposively sampling clinics serving high proportions of patients with LEP. We analyzed interviews with a mixed inductive-deductive approach applying the Consolidated Framework for Implementation Research. RESULTS: By September 2020, the 23 sites served 121,589 unique patients with in-person and 120,338 with telephone visits; 47% of these patients had LEP. Of 10,897 unique patients served by video visits, 38% had LEP. As a proportion of total visits, telemedicine (telephone and video) visits increased from 0-17% in October 2019-March 2020 to 10-98% in March-August 2020. We conducted 14 interviews at 11 sites. Themes included (1) existing telemedicine platforms and interpreter services were not optimized to support patients with LEP; (2) clinics invested significant labor iterating workflows; (3) sites with technological infrastructure and language-concordant staff were best suited to serve patients; (4) patients speaking less-represented languages or experiencing intersecting literacy barriers were underserved with telemedicine. Interviewees recommended innovations in telemedicine platforms and community-based access. CONCLUSIONS: Safety-net sites relied on existing resources to accommodate patients with LEP, but struggled providing access for the most marginalized. Proactive, data-driven strategies to address patient and community barriers as well as optimize clinical workflows with high-quality, certified medical interpreters are needed to ensure equitable access.

"We've Got to Bring Information to Where People Are Comfortable": Community-Based Advance Care Planning with the Black Community.

BACKGROUND: People identifying as Black/African American are less likely to engage in advance care planning (ACP) compared to their White peers, despite the association of ACP with improved patient and caregiver outcomes. OBJECTIVES: Assess facilitators/barriers to ACP in the San Francisco (SF) Black community and co-design/implement/test community-based ACP pilot events. DESIGN: Community-based participatory research, including qualitative research, intervention development, and implementation. PARTICIPANTS: In partnership with the SF Palliative Care Workgroup (which includes health system, city, and community-based organizations), we formed an African American Advisory Committee (n = 13). We conducted 6 focus groups with Black older adults (age ≥ 55), caregivers, and community leaders (n = 29). The Advisory Committee then selected 5 community-based organizations through a widespread request for proposal. These community-based organizations designed and implemented community-based pilot events to support ACP engagement. MAIN MEASURES: Two authors analyzed recorded focus group transcripts using thematic analysis. We assessed pre- vs post-event readiness to engage in ACP (validated ACP Engagement Survey; 1-4 scale, 4 = most ready) using Wilcoxon signed rank tests and assessed event acceptability with open-ended questions. KEY RESULTS: Themes included the importance of ACP to the Black community (sub-themes: strengthens families; preserves dignity, particularly for sexual/gender minorities; is tied to financial planning) and facilitators for increasing ACP engagement (sub-themes: culturally relevant materials; events in trusted community spaces including Black-owned businesses). A total of 114 participants attended 5 events; 74% identified as Black, and 16% as sexual/gender minorities. Readiness to engage in ACP was similar pre- vs post-events; 98% would recommend the events to others. CONCLUSIONS: Community-based ACP events designed and led by and for the Black community are highly acceptable. Novel insights underscored the importance of financial planning as part of ACP and the role of Black-owned businesses as trusted spaces for ACP-related discussions.

Racial and sociodemographic predictors of COVID-19 compared with influenza, appendicitis, and all-cause hospitalization: retrospective cohort analysis.

OBJECTIVE: To determine whether inequities in COVID-19 infection and hospitalization differ from those for common medical conditions: influenza, appendicitis, and all-cause hospitalization. DESIGN: Retrospective study based on electronic health records of three healthcare systems in San Francisco (university, public, and community) examining (1) racial/ethnic distribution in cases and hospitalization among patients with diagnosed COVID-19 (March-August 2020) and patients with diagnosed influenza, diagnosed appendicitis, or all-cause hospitalization (August 2017-March 2020), and (2) sociodemographic predictors of hospitalization among those with diagnosed COVID-19 and influenza. RESULTS: Patients 18 years or older with diagnosed COVID-19 (N = 3934), diagnosed influenza (N = 5932), diagnosed appendicitis (N = 1235), or all-cause hospitalization (N = 62,707) were included in the study. The age-adjusted racial/ethnic distribution of patients with diagnosed COVID-19 differed from that of patients with diagnosed influenza or appendicitis for all healthcare systems, as did hospitalization from these conditions compared to any cause. For example, in the public healthcare system, 68% of patients with diagnosed COVID-19 were Latine, compared with 43% of patients with diagnosed influenza, and 48% of patients with diagnosed appendicitis (p < 0.05). In multivariable logistic regressions, COVID-19 hospitalizations were associated with male sex, Asian and Pacific Islander race/ethnicity, Spanish language, and public insurance in the university healthcare system, and Latine race/ethnicity and obesity in the community healthcare system. Influenza hospitalizations were associated with Asian and Pacific Islander and other race/ethnicity in the university healthcare system, obesity in the community healthcare system, and Chinese language and public insurance in both the university and community healthcare systems. CONCLUSIONS: Racial/ethnic and sociodemographic inequities in diagnosed COVID-19 and hospitalization differed from those for diagnosed influenza and other medical conditions, with consistently higher odds among Latine and Spanish-speaking patients. This work highlights the need for disease-specific public health efforts in at-risk communities in addition to structural upstream interventions.

Email-Based Recruitment Into the Health eHeart Study: Cohort Analysis of Invited Eligible Patients.

BACKGROUND: Web- or app-based digital health studies allow for more efficient collection of health data for research. However, remote recruitment into digital health studies can enroll nonrepresentative study samples, hindering the robustness and generalizability of findings. Through the comprehensive evaluation of an email-based campaign on recruitment into the Health eHeart Study, we aim to uncover key sociodemographic and clinical factors that contribute to enrollment. OBJECTIVE: This study sought to understand the factors related to participation, specifically regarding enrollment, in the Health eHeart Study as a result of a large-scale remote email recruitment campaign. METHODS: We conducted a cohort analysis on all invited University of California, San Francisco (UCSF) patients to identify sociodemographic and clinical predictors of enrollment into the Health eHeart Study. The primary outcome was enrollment, defined by account registration and consent into the Health eHeart Study. The email recruitment campaign was carried out from August 2015 to February 2016, with electronic health record data extracted between September 2019 and December 2019. RESULTS: The email recruitment campaign delivered at least 1 email invitation to 93.5% (193,606/206,983) of all invited patients and yielded a 3.6% (7012/193,606) registration rate among contacted patients and an 84.1% (5899/7012) consent rate among registered patients. Adjusted multivariate logistic regression models analyzed independent sociodemographic and clinical predictors of (1) registration among contacted participants and (2) consent among registered participants. Odds of registration were higher among patients who are older, women, non-Hispanic White, active patients with commercial insurance or Medicare, with a higher comorbidity burden, with congestive heart failure, and randomized to receive up to 2 recruitment emails. The odds of registration were lower among those with medical conditions such as dementia, chronic pulmonary disease, moderate or severe liver disease, paraplegia or hemiplegia, renal disease, or cancer. Odds of subsequent consent after initial registration were different, with an inverse trend of being lower among patients who are older and women. The odds of consent were also lower among those with peripheral vascular disease. However, the odds of consent remained higher among patients who were non-Hispanic White and those with commercial insurance. CONCLUSIONS: This study provides important insights into the potential returns on participant enrollment when digital health study teams invest resources in using email for recruitment. The findings show that participant enrollment was driven more strongly by sociodemographic factors than clinical factors. Overall, email is an extremely efficient means of recruiting participants from a large list into the Health eHeart Study. Despite some improvements in representation, the formulation of truly diverse studies will require additional resources and strategies to overcome persistent participation barriers.

Ratings and experiences in using a mobile application to increase physical activity among university students: implications for future design.

University students have low levels of physical activity and are at risk of mental health disorders. Mobile apps to encourage physical activity can help students, who are frequent smartphone-users, to improve their physical and mental health. Here we report students' qualitative feedback on a physical activity smartphone app with motivational text messaging. We provide recommendations for the design of future apps. 103 students used the app for 6 weeks in the context of a clinical trial (NCT04440553) and answered open-ended questions before the start of the study and at follow-up. A subsample (n = 39) provided additional feedback via text message, and a phone interview (n = 8). Questions focused on the perceived encouragement and support by the app, text messaging content, and recommendations for future applications. We analyzed all transcripts for emerging themes using qualitative coding in Dedoose. The majority of participants were female (69.9%), Asian or Pacific Islander (53.4%), with a mean age of 20.2 years, and 63% had elevated depressive symptoms. 26% felt encouraged or neutral toward the app motivating them to be more physically active. Participants liked messages on physical activity benefits on (mental) health, encouraging them to complete their goal, and feedback on their activity. Participants disliked messages that did not match their motivations for physical activity and their daily context (e.g., time, weekday, stress). Physical activity apps for students should be adapted to their motivations, changing daily context, and mental health issues. Feedback from this sample suggests a key to effectiveness is finding effective ways to personalize digital interventions.

Caregiver perspectives on the everyday medical and social needs of long-term pediatric liver transplant patients.

Using in-depth interviews, we sought to characterize the everyday medical and social needs of pediatric liver transplant caregivers to inform the future design of solutions to improve care processes. Participants (parents/caregivers of pediatric liver transplant recipients) completed a survey (assessing socioeconomic status, economic hardship, health literacy, and social isolation). We then asked participants to undergo a 60-min virtual, semistructured qualitative interview to understand the everyday medical and social needs of the caregiver and their household. We intentionally oversampled caregivers who reported a social or economic hardship on the survey. Transcripts were analyzed using thematic analysis and organized around the Capability, Opportunity, Motivation-Behavior model. A total of 18 caregivers participated. Of the participants, 50% reported some form of financial strain, and about half had less than 4 years of college education. Caregivers had high motivation and capability in executing transplant-related tasks but identified several opportunities for improving care. Caregivers perceived the health system to lack capability in identifying and intervening on specific family social needs. Caregiver interviews revealed multiple areas in which family supports could be strengthened, including (1) managing indirect costs of prolonged hospitalizations (e.g., food, parking), (2) communicating with employers to support families' needs, (3) coordinating care across hospital departments, and (4) clarifying care team roles in helping families reduce both medical and social barriers. This study highlights the caregiver perspective on barriers and facilitators to posttransplant care. Future work should identify whether these themes are present across transplant centers. Caregiver perspectives should help inform future interventions aimed at improving long-term outcomes for children after liver transplantation.

Addressing Social Adversity to Improve Outcomes for Children After Liver Transplant.

The social determinants of health, defined as the conditions in which we live, learn, work, and play, undoubtedly impact health outcomes. Social adversity in childhood perpetuates over the life course and has consequences extending into adulthood. This link between social adversity and adverse outcomes extends to children undergoing liver transplant, with children from socioeconomically deprived neighborhoods experiencing a greater burden of morbidity and mortality after transplant. Yet, we lack an in-depth understanding of how to address social adversity for these children. Herein, we lay out a strategy to develop and test interventions to address social adversity for children undergoing liver transplant. To do so, we believe that more granular data on how specific social risk factors (e.g., food insecurity) impact outcomes for children after liver transplant are needed. This will provide the liver transplant community with knowledge on the most pressing problems. Then, using the National Academies of Sciences, Engineering, and Medicine's framework for integrating social needs into medical care, the health system can start to develop and test health system interventions. We believe that attending to our patients' social adversity will realize improved outcomes for children undergoing liver transplant.

Daily Motivational Text Messages to Promote Physical Activity in University Students: Results From a Microrandomized Trial.

BACKGROUND: Low physical activity is an important risk factor for common physical and mental disorders. Physical activity interventions delivered via smartphones can help users maintain and increase physical activity, but outcomes have been mixed. PURPOSE: Here we assessed the effects of sending daily motivational and feedback text messages in a microrandomized clinical trial on changes in physical activity from one day to the next in a student population. METHODS: We included 93 participants who used a physical activity app, "DIAMANTE" for a period of 6 weeks. Every day, their phone pedometer passively tracked participants' steps. They were microrandomized to receive different types of motivational messages, based on a cognitive-behavioral framework, and feedback on their steps. We used generalized estimation equation models to test the effectiveness of feedback and motivational messages on changes in steps from one day to the next. RESULTS: Sending any versus no text message initially resulted in an increase in daily steps (729 steps, p = .012), but this effect decreased over time. A multivariate analysis evaluating each text message category separately showed that the initial positive effect was driven by the motivational messages though the effect was small and trend-wise significant (717 steps; p = .083), but not the feedback messages (-276 steps, p = .4). CONCLUSION: Sending motivational physical activity text messages based on a cognitive-behavioral framework may have a positive effect on increasing steps, but this decreases with time. Further work is needed to examine using personalization and contextualization to improve the efficacy of text-messaging interventions on physical activity outcomes. CLINICALTRIALS.GOV IDENTIFIER: NCT04440553.

Use of Self-Measured Blood Pressure Monitoring to Improve Hypertension Equity.

PURPOSE OF REVIEW: To evaluate how self-measured blood pressure (SMBP) monitoring interventions impact hypertension equity. RECENT FINDINGS: While a growing number of studies have recruited participants from safety-net settings, racial/ethnic minority groups, rural areas, or lower socio-economic backgrounds, few have reported on clinical outcomes with many choosing to evaluate only patient-reported outcomes (e.g., satisfaction, engagement). The studies with clinical outcomes demonstrate that SMBP monitoring (a) can be successfully adopted by historically excluded patient populations and safety-net settings and (b) improves outcomes when paired with clinical support. There are few studies that explicitly evaluate how SMBP monitoring impacts hypertension disparities and among rural, low-income, and some racial/ethnic minority populations. Researchers need to design SMBP monitoring studies that include disparity reduction outcomes and recruit from broader populations that experience worse hypertension outcomes. In addition to assessing effectiveness, studies must also evaluate how to mitigate multi-level barriers to real-world implementation of SMBP monitoring programs.

Centering Health Equity in Telemedicine.

In the wake of the racial injustices laid bare in 2020, on top of centuries of systemic racism, it is clear we need actionable strategies to fundamentally restructure health care systems to achieve racial/ethnic health equity. This paper outlines the pillars of a health equity framework from the Institute for Healthcare Improvement, overlaying a concrete example of telemedicine equity. Telemedicine is a particularly relevant and important topic, given the growing evidence of disparities in uptake by racial/ethnic, linguistic, and socioeconomic groups in the United States during the COVID-19 pandemic, as well as the new standard of care that telemedicine represents post-pandemic. We present approaches for telemedicine equity across the domains of: (1) strategic priorities of a health care organization, (2) structures and processes to advance equity, (3) strategies to address multiple determinants of health, (4) elimination of institutional racism and oppression, and (5) meaningful partnerships with patients and communities.

Satisfaction can co-exist with hesitation: qualitative analysis of acceptability of telemedicine among multi-lingual patients in a safety-net healthcare system during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic triggered unprecedented expansion of outpatient telemedicine in the United States in all types of health systems, including safety-net health systems. These systems generally serve low-income, racially/ethnically/linguistically diverse patients, many of whom face barriers to digital health access. These patients' perspectives are vital to inform ongoing, equitable implementation efforts. METHODS: Twenty-five semi-structured interviews exploring a theoretical framework of technology acceptability were conducted from March through July 2020. Participants had preferred languages of English, Spanish, or Cantonese and were recruited from three clinics (general medicine, obstetrics, and pulmonary) within the San Francisco Health Network. Both deductive and inductive coding were performed. In a secondary analysis, qualitative data were merged with survey data to relate perspectives to demographic factors and technology access/use. RESULTS: Participants were diverse with respect to language (52% non-English-speaking), age (range 23-71), race/ethnicity (24% Asian, 20% Black, 44% Hispanic/Latinx, 12% White), & smartphone use (80% daily, 20% weekly or less). All but 2 had a recent telemedicine visit (83% telephone). Qualitative results revealed that most participants felt telemedicine visits fulfilled their medical needs, were convenient, and were satisfied with their telemedicine care. However, most still preferred in-person visits, expressing concern that tele-visits relied on patients' abilities to access telemedicine, as well as monitor and manage their own health without in-person physical evaluation. CONCLUSIONS: High satisfaction with telemedicine can co-exist with patient-expressed hesitations surrounding the perceived effectiveness, self-efficacy, and digital access barriers associated with a new model of care. More research is needed to guide how healthcare systems and clinicians make decisions and communicate about visit modalities to support high-quality care that responds to patients' needs and circumstances.

Center variation in long-term outcomes for socioeconomically deprived children.

Neighborhood socioeconomic deprivation is associated with adverse outcomes after pediatric liver transplant. We sought to determine if this relationship varies by transplant center. Using SRTR, we included patients <18 years transplanted 2008-2013 (N = 2804). We matched patient ZIP codes to a deprivation index (range [0,1]; higher values indicate increased socioeconomic deprivation). A center-level patient-mix deprivation index was defined by the distribution of patient-level deprivation. Centers (n = 66) were classified as high or low deprivation if their patient-mix deprivation index was above or below the median across centers. Center quality was classified as low or high graft failure if graft survival rates were better or worse than the overall 10-year graft survival rate. Primary outcome was patient-level graft survival. We used random-effect Cox models to evaluate center-level covariates on graft failure. We modeled center quality using stratified Cox models. In multivariate analysis, each 0.1 increase in the patient-mix deprivation index was associated with increased hazard of graft failure (HR 1.32; 95%CI: 1.05, 1.66). When stratified by center quality, patient-mix deprivation was no longer significant (HR 1.07, 95%CI: 0.89, 1.28). Some transplant centers care for predominantly high deprivation children and maintain excellent outcomes. Revealing and replicating these centers' practice patterns should enable more equitable outcomes.

Challenges and solutions to employing natural language processing and machine learning to measure patients' health literacy and physician writing complexity: The ECLIPPSE study.

OBJECTIVE: In the National Library of Medicine funded ECLIPPSE Project (Employing Computational Linguistics to Improve Patient-Provider Secure Emails exchange), we attempted to create novel, valid, and scalable measures of both patients' health literacy (HL) and physicians' linguistic complexity by employing natural language processing (NLP) techniques and machine learning (ML). We applied these techniques to > 400,000 patients' and physicians' secure messages (SMs) exchanged via an electronic patient portal, developing and validating an automated patient literacy profile (LP) and physician complexity profile (CP). Herein, we describe the challenges faced and the solutions implemented during this innovative endeavor. MATERIALS AND METHODS: To describe challenges and solutions, we used two data sources: study documents and interviews with study investigators. Over the five years of the project, the team tracked their research process using a combination of Google Docs tools and an online team organization, tracking, and management tool (Asana). In year 5, the team convened a number of times to discuss, categorize, and code primary challenges and solutions. RESULTS: We identified 23 challenges and associated approaches that emerged from three overarching process domains: (1) Data Mining related to the SM corpus; (2) Analyses using NLP indices on the SM corpus; and (3) Interdisciplinary Collaboration. With respect to Data Mining, problems included cleaning SMs to enable analyses, removing hidden caregiver proxies (e.g., other family members) and Spanish language SMs, and culling SMs to ensure that only patients' primary care physicians were included. With respect to Analyses, critical decisions needed to be made as to which computational linguistic indices and ML approaches should be selected; how to enable the NLP-based linguistic indices tools to run smoothly and to extract meaningful data from a large corpus of medical text; and how to best assess content and predictive validities of both the LP and the CP. With respect to the Interdisciplinary Collaboration, because the research required engagement between clinicians, health services researchers, biomedical informaticians, linguists, and cognitive scientists, continual effort was needed to identify and reconcile differences in scientific terminologies and resolve confusion; arrive at common understanding of tasks that needed to be completed and priorities therein; reach compromises regarding what represents "meaningful findings" in health services vs. cognitive science research; and address constraints regarding potential transportability of the final LP and CP to different health care settings. DISCUSSION: Our study represents a process evaluation of an innovative research initiative to harness "big linguistic data" to estimate patient HL and physician linguistic complexity. Any of the challenges we identified, if left unaddressed, would have either rendered impossible the effort to generate LPs and CPs, or invalidated analytic results related to the LPs and CPs. Investigators undertaking similar research in HL or using computational linguistic methods to assess patient-clinician exchange will face similar challenges and may find our solutions helpful when designing and executing their health communications research.

Using human centered design to identify opportunities for reducing inequities in perinatal care.

BACKGROUND: Extreme disparities in access, experience, and outcomes highlight the need to transform how pregnancy care is designed and delivered in the United States, especially for low-income individuals and people of color. METHODS: We used human-centered design (HCD) to understand the challenges facing Medicaid-insured pregnant people and design interventions to address these challenges. The HCD method has three phases: Inspiration, Ideation, and Implementation. This study focused on the first and second. In the Inspiration phase we conducted semi-structured interviews with a purposeful sample of stakeholders who had either received or participated in the care of Medicaid-insured pregnant people within our community, with a specific emphasis on representation from marginalized communities. Using a general inductive approach to thematic analysis, we identified themes, which were then framed into design opportunities. In the Ideation phase, we conducted structured brainstorming sessions to generate potential prototypes of solutions, which were tested and iterated upon through a series of community events and engagement with a diverse community advisory group. RESULTS: We engaged a total of 171 stakeholders across both phases of the HCD methodology. In the Inspiration phase, interviews with 23 community members and an eight-person focus group revealed seven insights centered around two main themes: (1) racism and discrimination create major barriers to access, experience, and the ability to deliver high-value pregnancy care; (2) pregnancy care is overmedicalized and does not treat the pregnant person as an equal and informed partner. In the Ideation phase, 162 ideas were produced and translated into eight solution prototypes. Community scoring and feedback events with 140 stakeholders led to the progressive refinement and selection of three final prototypes: (1) implementing telemedicine (video visits) within the safety-net system, (2) integrating community-based peer support workers into healthcare teams, and (3) delivering co-located pregnancy-related care and services into high-need neighborhoods as a one-stop shop. CONCLUSIONS: Using HCD methodology and a collaborative community-health system approach, we identified gaps, opportunities, and solutions to address perinatal care inequities within our urban community. Given the urgent need for implementable and effective solutions, the design process was particularly well-suited because it focuses on understanding and centering the needs and values of stakeholders, is multi-disciplinary through all phases, and results in prototyping and iteration of real-world solutions.

Using Electronic Health Record Portals to Improve Patient Engagement: Research Priorities and Best Practices.

Ninety percent of health care systems now offer patient portals to access electronic health records (EHRs) in the United States, but only 15% to 30% of patients use these platforms. Using PubMed, the authors identified 53 studies published from September 2013 to June 2019 that informed best practices and priorities for future research on patient engagement with EHR data through patient portals, These studies mostly involved outpatient settings and fell into 3 major categories: interventions to increase use of patient portals, usability testing of portal interfaces, and documentation of patient and clinician barriers to portal use. Interventions that used one-on-one patient training were associated with the highest portal use. Patients with limited health or digital literacy faced challenges to portal use. Clinicians reported a lack of workflows to support patient use of portals in routine practice. These studies suggest that achieving higher rates of patient engagement through EHR portals will require paying more attention to the needs of diverse patients and systematically measuring usability as well as scope of content. Future work should incorporate implementation science approaches and directly address the key role of clinicians and staff in promoting portal use.