Online Forums as a Tool for Broader Inclusion of Voices on Health Care Communication Experiences and Serious Illness Care: Mixed Methods Study.

BACKGROUND: Existing health care research, including serious illness research, often underrepresents individuals from historically marginalized communities. Capturing the nuanced perspectives of individuals around their health care communication experiences is difficult. New research strategies are needed that increase engagement of individuals from diverse backgrounds. OBJECTIVE: The aim of this study was to develop a mixed methods approach with qualitative online forums to better understand health communication experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals; older adults; and people with low income, disability, or serious illness. METHODS: We used a multiphase mixed methods, community-informed research approach to design study instruments and engage participants. We engaged a diverse group of collaborators with lived experience of navigating the health care system who provided feedback on instruments, added concepts for testing, and offered guidance on creating a safe experience for participants (phase 1). We conducted a national quantitative survey between April and May 2021 across intrapersonal, interpersonal, and systems-level domains, with particular focus on interpersonal communication between patients and clinicians (phase 2). We conducted two asynchronous, qualitative online forums, a technique used in market research, between June and August 2021, which allowed us to contextualize the learnings and test concepts and messages (phase 3). Using online forums allowed us to probe more deeply into results and hypotheses from the survey to better understand the "whys" and "whats" that surfaced and to test public messages to encourage action around health. RESULTS: We engaged 46 community partners, including patients and clinicians from a Federally Qualified Health Center, to inform study instrument design. In the quantitative survey, 1854 adults responded, including 50.5% women, 25.2% individuals over 65 years old, and 51.9% individuals with low income. Nearly two-thirds identified as non-Hispanic white (65.7%), 10.4% identified as non-Hispanic Black, and 15.5% identified as Hispanic/Latino. An additional 580 individuals participated in online forums, including 60.7% women, 17.4% individuals over 65 years old, and 49.0% individuals with low income. Among the participants, 70.3% identified as non-Hispanic white, 16.0% as non-Hispanic Black, and 9.5% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the forums. CONCLUSIONS: We achieved modest overrepresentation of people who were over 65 years old, identified as non-Hispanic Black, and had low income in our online forums. The size of the online forums (N=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Individuals who identify as Hispanic/Latino remained underrepresented, likely because the online forums were offered only in English. Overall, our findings demonstrate the feasibility of using the online forum qualitative approach in a mixed methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions.

Strategies to Make Telemedicine a Friend, Not a Foe, in the Provision of Accessible and Equitable Cancer Care.

Telemedicine has the potential to improve access to cancer care, particularly for patients with functional limitations, high symptom burdens, or financial or geographic constraints. However, there is also a risk that telemedicine can widen healthcare disparities among patients facing systemic disadvantages like those with technological barriers, poor digital literacy, older age, or non-English language preferences. To optimize telemedicine usage, we must implement practical strategies like video onboarding programs, user-friendly technology platforms, optimizing the clinician's environment, and best practices for using interpreters. Policy changes such as state licensing requirements, controlled substance prescribing requirements, and payment parity are also crucial. This Perspective highlights these practical strategies and policy recommendations to ensure accessible and equitable cancer care augmented by telemedicine.

Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness.

Importance: Most studies use impaired functioning alone to specify populations with disabilities. However, some people with functional impairments do not identify as disabled. With functional status-based definitions, studies have shown disparate care quality for people with disabilities. Objective: To examine whether impairment and disability identity have different associations with perceived health care experiences and explore factors associated with disability identification. Design, Setting, and Participants: This cross-sectional study used a nationally representative survey of US adults conducted from April 20 through May 31, 2021, and analyzed between June 1 and August 31, 2022. Survey participants were 1822 English- or Spanish-speaking adults responding either online or via telephone. Exposures: Using 8 survey questions, participants were grouped according to presence of impairment and disability identity. Main Outcomes and Measures: Likert scale measures of trust, respect, and fairness (henceforth, procedural justice measures) were dichotomized. Sociodemographic characteristics and rates of procedural justice responses were compared across groups. Multivariable logistic regressions adjusting for baseline characteristics were performed to (1) estimate associations of impairment and disability identity with perceptions of procedural justice and (2) explore factors associated with disability identification. Analyses applied survey weights. Results: Of 6126 individuals invited to participate, 1854 (30.3%) completed the survey. Thirty-two were excluded due to unreportable gender, for a final analytic sample of 1822 participants. Participants with impairments (n = 816; mean [SD] age, 48.1 [17.0] years; 51.2% women, 48.8% men) had worse perceptions on 7 of 10 procedural justice measures (crude) compared with those without impairments (n = 1006; mean [SD] age, 49.6 [18.1] years, 55.1% female, 44.9% male). Among respondents with impairments, those who did (n = 340) vs did not (n = 476) identify as disabled gave better ratings for clinician communication efforts (a lot of effort, 38.8% vs 31.0%) and having health goals understood (understood very or fairly well, 77.2% vs 70.1%) but gave worse ratings for respect (almost never felt inferior or talked down to, 66.1% vs 59.1%). Disability identification was associated with more reports of unfair treatment (31.0% vs 22.4%; adjusted odds ratio, 1.65; 95% CI, 1.12-2.42) and of being unafraid to ask questions or disagree (50.5% vs 40.1%; adjusted odds ratio, 1.51; 95% CI, 1.04-20.19). Income and employment were associated with disability identification. Conclusions and Relevance: In this cross-sectional survey study of US adults, health care perceptions differed between groups defined by impairment status and disability identity. These findings suggest that, alongside functional measures, health systems should capture disability identity to better address disparities for people with impairments.

Creating a Dedicated Palliative Care Team for ICU Spanish Speaking Patients in Response to COVID-19.

CONTEXT: The Latinx population faced higher rates of infection and severe illness during the COVID-19 pandemic, resulting in an increased need for palliative care services. OBJECTIVES: We describe the creation and impact of a formal palliative care initiative developed for seriously ill, Spanish-speaking patients during the COVID-19 pandemic at a tertiary care academic medical center. METHODS: Patients were enrolled in the Spanish Palliative Care Initiative during a two-month period starting in April 2020. Selected patients were longitudinally followed by a rotating team of Spanish-speaking palliative care clinicians. Following the intervention, a retrospective chart review was conducted to evaluate the impact of the program. RESULTS: We enrolled 22 patients. The most frequent palliative care task completed during the initial visit was information giving (77%) and during follow-up visits were goals of care discussion (59%) and coping support (59%). Fifteen patients (68%) had a change in code status and 4 patients (18%) were discharged to hospice. CONCLUSION: The creation of a focused clinical program targeting a historically marginalized population offered opportunity for early palliative care intervention in clinical care for Spanish-speaking patients. This underscores the need for Spanish-language concordant palliative care to improve serious illness care, and end-of-life care, by providing continuity of care, spiritual care, and ICU team support.

Innovation in a Crisis: Lessons Learned from the Rapid Development of an End-of-Life Palliative Care Unit during the COVID-19 Pandemic.

COVID-19 strained our nation's hospitals and exposed gaps in care. As COVID-19 surged in Boston in March 2020, we worked to rapidly create a Palliative Care Compassion Unit (PCCU) to care for those dying of COVID-19 or non-COVID-19-related illnesses. The PCCU provided interdisciplinary end-of-life care, supported families, and enabled surge teams to focus on patients needing life-sustaining treatments. In this study, we describe the creation of the PCCU, including opportunities and challenges, in hopes of lending insight to other palliative care teams who may need to rapidly craft new care models during a crisis.

Redesigned geriatric emergency care may have helped reduce admissions of older adults to intensive care units.

Charged with transforming geriatric emergency care by applying palliative care principles, a process improvement team at New York City's Mount Sinai Medical Center developed the GEDI WISE (Geriatric Emergency Department Innovations in Care through Workforce, Informatics, and Structural Enhancements) model. The model introduced workforce enhancements for emergency department (ED) and adjunct staff, including role redefinition, retraining, and education in palliative care principles. Existing ED triage nurses screened patients ages sixty-five and older to identify those at high risk of ED revisit and hospital readmission. Once fully trained, these nurses screened all but 6 percent of ED visitors meeting the screening criteria. Newly hired ED nurse practitioners identified high-risk patients suitable for and desiring palliative and hospice care, then expedited referrals. Between January 2011 and May 2013 the percentage of geriatric ED admissions to the intensive care unit fell significantly, from 2.3 percent to 0.9 percent, generating an estimated savings of more than $3 million to Medicare. The decline in these admissions cannot be confidently attributed to the GEDI WISE program because other geriatric care innovations were implemented during the study period. GEDI WISE programs are now running at Mount Sinai and two partner sites, and their potential to affect the quality and value of geriatric emergency care continues to be examined.