"Holy cow, where do I sign up?" Attitudes of Military Veterans toward Epigenomic Biomarker Toxic Exposure Testing.

Background: With the signing of the PACT Act in 2022, there is great interest and investment in studying toxic exposures encountered during military service. One way to address this is through the identification of epigenomic biomarkers associated with exposures. There is increasing evidence suggesting that exposure to toxic substances may result in alterations to DNA methylation and resultant gene expression. These epigenomic changes may lead to adverse health effects for exposed individuals and their offspring. While the development of epigenomic biomarkers for exposures could facilitate understanding of these exposure-related health effects, such testing could also provide unwanted information. Objectives: Explore Veterans' attitudes toward epigenomic biomarker research and the potential to test for past exposures that could pose intergenerational risk. Methods: Semi-structured interviews with Veterans (n=22) who experienced potentially harmful exposures during their military service. Results: Twenty Veterans said they would hypothetically want to receive epigenomic information related to their toxic exposures and potential health impacts as part of a research study. Veterans identified nine potential benefits of this research, including promoting insights concerning intergenerational health, identification of early health interventions to mitigate the impact of exposures, and additional knowledge or explanation for their experiences. At the same time, 16 participants noted potential risks, including psychological distress in response to results, concerns about receiving non-actionable, uncertain, or inaccurate results, and issues related to privacy and discrimination. Ten participants also identified at least one condition in their children that they thought could be related to their exposure and most said they would be interested in receiving research results related to their children's and grandchildren's risk of developing a health condition associated with their exposure. Discussion: Results suggest that Veterans might welcome benefits of epigenomic research related to military exposures yet have some concerns about potential negative impacts.

Maybe they had a bad day: how LGBTQ and BIPOC patients react to bias in healthcare and struggle to speak out.

OBJECTIVE: People who experience marginalization, including Black, Indigenous, People of Color (BIPOC) and Lesbian, Gay, Bisexual, Transgender, Queer, Plus (ie, all other marginalized genders and sexual orientations) people (LGBTQ+) experience discrimination during healthcare interactions, which negatively impacts patient-provider communication and care. Yet, scarce research examines the lived experience of unfair treatment among patients from marginalized groups to guide patient-centered tools that improve healthcare equity. MATERIALS AND METHODS: We interviewed 25 BIPOC and/or LGBTQ+ people about their experiences of unfair treatment and discrimination when visiting healthcare providers. Through thematic analysis, we describe participants' immediate reactions and longer-term consequences of those experiences. RESULTS: We identified 4 ways that participants reacted to discrimination in the moment: Fighting, Fleeing, Excusing, and Working Around Bias. Long-term consequences reflect 6 ways they coped: Delaying or Avoiding Care, Changing Healthcare Providers, Self-prescribing, Covering Behaviors, Experiencing Health Complications, and Mistrusting Healthcare Institutions. DISCUSSION: By describing how patients react to experiences of unfair treatment and discrimination, our findings enhance the understanding of health disparities as patients cope and struggle to speak out.To combat these problems, we identify 3 future directions for informatics interventions that improve provider behavior, support patient advocacy, and address power dynamics in healthcare. CONCLUSIONS: BIPOC and LGBTQ+ patients' perspectives on navigating unfair treatment and discrimination in healthcare offers critical insight into their experiences and long-term consequences of those experiences. Understanding the circumstances and consequences of unfair treatment, discrimination, and the impact of bias through this patient-centered lens is crucial to inform informatics technologies that promote health equity.

Current Approaches in Telehealth and Telerehabilitation for Spinal Cord Injury (TeleSCI).

Purpose of Review: Telehealth and telerehabilitation in spinal cord injury (teleSCI) is a growing field that can improve access to care and improve health outcomes in the spinal cord injury population. This review provides an overview of the recent literature on the topic of teleSCI and provides insights on current evidence, future directions, and considerations when using teleSCI for clinical care. Recent Findings: TeleSCI is used most often for preventive health; management of chronic pain, anxiety, and depression; and rehabilitation-related interventions. As video telehealth becomes mainstream, growth in wearable monitors, bio and neurofeedback mechanisms, and app-based care is expected. Summary: TeleSCI is growing in prevalence, demonstrates positive impact on health outcomes, and requires ongoing study to identify, refine, and implement best practices.

Broken down by bias: Healthcare biases experienced by BIPOC and LGBTQ+ patients.

Bias toward historically marginalized patients affects patient-provider interactions and can lead to lower quality of care and poor health outcomes for patients who are Black, Indigenous, People of Color (BIPOC) and Lesbian, Gay, Bisexual, Transgender and Gender Diverse (LGBTQ+). We gathered experiences with biased healthcare interactions and suggested solutions from 25 BIPOC and LGBTQ+ people. Through qualitative thematic analysis of interviews, we identified ten themes. Eight themes reflect the experience of bias: Transactional Care, Power Inequity, Communication Casualties, Bias-Embedded Medicine, System-level problems, Bigotry in Disguise, Fight or Flight, and The Aftermath. The remaining two themes reflect strategies for improving those experiences: Solutions and Good Experiences. Characterizing these themes and their interconnections is crucial to design effective informatics solutions that can address biases operating in clinical interactions with BIPOC and LGBTQ+ patients, improve the quality of patient-provider interactions, and ultimately promote health equity.

Different roles with different goals: Designing to support shared situational awareness between patients and clinicians in the hospital.

OBJECTIVE: Team situational awareness helps to ensure high-quality care and prevent errors in the complex hospital environment. Although extensive work has examined factors that contribute to breakdowns in situational awareness among clinicians, patients' and caregivers' roles have been neglected. To address this gap, we studied team-based situational awareness from the perspective of patients and their caregivers. MATERIALS AND METHODS: We utilized a mixed-methods approach, including card sorting and semi-structured interviews with hospitalized patients and their caregivers at a pediatric hospital and an adult hospital. We analyzed the results utilizing the situational awareness (SA) theoretical framework, which identifies 3 distinct stages: (1) perception of a signal, (2) comprehension of what the signal means, and (3) projection of what will happen as a result of the signal. RESULTS: A total of 28 patients and 19 caregivers across the 2 sites participated in the study. Our analysis uncovered how team SA helps patients and caregivers ensure that their values are heard, their autonomy is supported, and their clinical outcomes are the best possible. In addition, our participants described both barriers-such as challenges with communication-and enablers to facilitating shared SA in the hospital. DISCUSSION: Patients and caregivers possess critical knowledge, expertise, and values required to ensure successful and accurate team SA. Therefore, hospitals need to incorporate tools that facilitate patients and caregivers as key team members for effective SA. CONCLUSIONS: Elevating patients and caregivers from passive recipients to equal contributors and members of the healthcare team will improve SA and ensure the best possible outcomes.

Designing Inpatient Portals to Support Patient Agency and Dynamic Hospital Experiences.

Inpatient portals could help patients engage in their hospital care, yet several design, usability, and adoption issues prevent this technology from fulfilling its potential. Despite patients having needs that extend beyond the scope of existing inpatient portals, we know less about how to design such portals that support them. To learn about effective designs, we created three mid-fidelity prototypes representing novel approaches for inpatient portal design. Then, we conducted interviews with 21 pediatric and adult inpatients to gather their feedback on these prototypes. Participants shared how the prototypes addressed the following needs: forming active partnerships, navigating relationships and power dynamics with clinicians, understanding complexity of care, contextualizing health information, increasing efficiency of communication, and preventing lost information. We discuss two key implications-supporting patients' agency and dynamic needs throughout their hospital care-for the future of inpatient portal designs.