La Linterna: Clinical model for trauma-exposed, migrant children.

OBJECTIVE: Exposure to childhood adversity is increasingly recognized as an important topic in pediatric medicine and a powerful driver of adult disease burden. While significant evidence exists that early intervention is critical for children exposed to adversities, few models have been established for addressing the complex medical, psychological, and social needs of these patients in a holistic manner. METHOD: La Linterna is an interdisciplinary clinical initiative providing trauma-informed primary care, mental health treatment, immigration legal counsel, and comprehensive case management to children (and their families) exposed to adversities throughout the migration process. Started in 2019, the clinic serves immigrant families throughout the city of Los Angeles. Described as the process of implementing an interdisciplinary, trauma-informed practice to meet the medical, mental health, social care needs of this uniquely vulnerable patient population. RESULTS: Strong evidence exists in the medical literature arguing for the implementation of a holistic, trauma-informed model of patient care. We describe "principles" and "lessons learned" during implementation, as well as detail an approach to improving services to immigrant families who have experienced adversities via an interactive, patient-centered process. CONCLUSIONS: Trauma-informed care is critical for meeting the needs of vulnerable children and their families. La Linterna represents an innovative and effective way to enhance care for one of the most vulnerable United States populations, immigrant and refugee families. Implementation of all or some of the program's components is possible throughout the United States and would mark an improvement over current practice. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care.

BACKGROUND: People with lived health care experiences (often referred to as "patients") are increasingly contributing to health care and are most effective when they are involved as partners who can contribute complementary knowledge alongside other stakeholders in health care. OBJECTIVE: Convening The Center aimed to bring together "people known as patients"-the center of health care-to address priorities as they defined them. METHODS: According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation. RESULTS: The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients' involvement, ranging from individual to community to systemic involvement. CONCLUSIONS: The descriptors of patients in academic literature typically focus on what health care providers think patients "are" rather than on what patients "do." The primary result of this project is a framework for mapping what patients "do" and "where" they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation.

Using Participatory Design to Inform the Connected and Open Research Ethics (CORE) Commons.

Mobile health (mHealth) research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE (Connected and Open Research Ethics) platform now features a community forum, a resource library and a network of nearly 600 global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter.

Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives.

Vast quantities of personal health information and private identifiable information are being created through mobile apps, wearable sensors, and social networks. While new strategies and tools for obtaining health data have expanded researchers' abilities to design and test personalized and adaptive health interventions, the deployment of pervasive sensing and computational techniques to gather research data is raising ethical challenges for Institutional Review Boards (IRBs) charged with protecting research participants. To explore experiences with, and perceptions about, technology-enabled research, and identify solutions for promoting responsible conduct of this research we conducted focus groups with human research protection program and IRB affiliates. Our findings outline the need for increased collaboration across stakeholders in terms of: (1) shared and dynamic resources that improve awareness of technologies and decrease potential threats to participant privacy and data confidentiality, and (2) development of appropriate and dynamic standards through collaboration with stakeholders in the research ethics community.

Toward Usable Evidence: Optimizing Knowledge Accumulation in HCI Research on Health Behavior Change.

Over the last ten years, HCI researchers have introduced a range of novel ways to support health behavior change, from glanceable displays to sophisticated game dynamics. Yet, this research has not had as much impact as its originality warrants. A key reason for this is that common forms of evaluation used in HCI make it difficult to effectively accumulate-and use-knowledge across research projects. This paper proposes a strategy for HCI research on behavior change that retains the field's focus on novel technical contributions while enabling accumulation of evidence that can increase impact of individual research projects both in HCI and the broader behavior-change science. The core of this strategy is an emphasis on the discovery of causal effects of individual components of behavior-change technologies and the precise ways in which those effects vary with individual differences, design choices, and contexts in which those technologies are used.

Influence of patient age and comorbid burden on clinician attitudes toward heart failure guidelines.

BACKGROUND: Clinical practice guidelines have been criticized for insufficient attention to the unique needs of patients of advanced age and with multiple comorbid conditions. However, little empiric research is available to inform this topic. METHODS: We conducted telephone interviews with staff physicians and nurse practitioners in 4 VA health care systems. Respondents were asked to rate the usefulness of national heart failure guidelines for patients of different ages and levels of comorbid burden on a 5-point scale and to comment on the reasons for their ratings. RESULTS: Of 139 clinicians contacted, 65 (47%) completed the interview. Almost half (49%) were women, and 48 (74%) were general internists or family practitioners. On a 5-point scale assessing the usefulness of clinical practice guidelines for heart failure, the mean (SD) response ranged from 4.4 (0.7) for patients younger than 65 years with few comorbid conditions to 3.5 (1.2) for patients older than 80 years with multiple comorbid conditions (P<0.001). The difference in perceived usefulness varied more by patient age than by degree of comorbidity (P = 0.02). Four major concepts underlay the perceived usefulness of guidelines across different patient types: (1) harm of treatment and complexity of the patient's clinical condition and pharmacologic needs, (2) expected benefits of treatment, (3) patient preferences and abilities, and (4) confidence in the validity of guideline recommendations. CONCLUSION: Clinicians perceive heart failure guidelines to be substantially less useful in patients of older age and with greater comorbid burden. Concerns about the clinical and pharmacologic complexity of these patients and the expected benefits of drug therapy were commonly invoked as reasons for this skepticism.

Age and receipt of guideline-recommended medications for heart failure: a nationwide study of veterans.

BACKGROUND: Older patients often receive less guideline-concordant care for heart failure than younger patients. OBJECTIVE: To determine whether age differences in heart failure care are explained by patient, provider, and health system characteristics and/or by chart-documented reasons for non-adherence to guidelines. DESIGN AND PATIENTS: Retrospective cohort study of 2,772 ambulatory veterans with heart failure and left ventricular ejection fraction <40% from a 2004 nationwide medical record review program (the VA External Peer Review Program). MAIN MEASURES: Ambulatory use of ACE inhibitors, angiotensin receptor blockers (ARBs), and beta blockers. RESULTS: Among 2,772 patients, mean age was 73 +/- 10 years, 87% received an ACE inhibitor or ARB, and 82% received a beta blocker. When patients with explicit chart-documented reasons for not receiving these drugs were excluded, 95% received an ACE inhibitor or ARB and 89% received a beta blocker. In multivariable analyses controlling for a variety of patient and health system characteristics, the adjusted odds ratio for ACE-inhibitor and ARB use was 0.43 (95% CI 0.24-0.78) for patients age 80 and over vs. those age 50-64 years, and the adjusted odds ratio for beta blocker use was 0.66 (95% CI 0.48-0.93) between the two age groups. The magnitude of these associations was similar but not statistically significant after excluding patients with chart-documented reasons for not prescribing ACE inhibitors or ARBs and beta blockers. CONCLUSIONS: A high proportion of veterans receive guideline-recommended medications for heart failure. Older veterans are consistently less likely to receive these drugs, although these differences were no longer significant when accounting for patients with chart-documented reasons for not prescribing these drugs. Closely evaluating reasons for non-prescribing in older adults is essential to assessing whether non-treatment represents good clinical judgment or missed opportunities to improve care.