Introduction: The lack of racial/ethnic diversity in research potentially limits the generalizability of findings to a broader population, highlighting the need for greater diversity and inclusion in clinical research. Qualitative research (i.e., focus groups) was conducted to identify (i) the potential motivators and barriers to study participation across different races and ethnicities; (ii) preferred delivery of education and information to support healthcare decision‐making and the role of the community.Methods: Patient focus groups were conducted with 26 participants from the sponsor's Patient Engagement Research Councils selected through subjective sampling. Recruitment prioritized adequate representation across different race/ethnic groups. Participation was voluntary and participants underwent a confidential interview process before selection. Narrative analysis was used to identify themes and draw insights from interactions. Experienced research specialists identified emerging concepts, and these were tested against new observations. The frequency of each concept was examined to understand its importance.Results: Based on self‐selected race/ethnicity, participants were divided into five focus groups (Groups: African American/Black: 2; Hispanic/Latino, Asian American, and white: 1 each) and were asked to share their experiences/opinions regarding the stated objectives. Barriers to study participation included: limited awareness of opportunities to participate in research, fears about changes in standard therapy, breaking cultural norms/stigma, religion‐related concerns and mistrust of clinical research. Participants identified the importance of transparency by pharmaceutical companies and other entities to build trust and partnership and cited key roles that communities can play. The perceptions of the African American group regarding diversity/inclusion in research studies appeared to be different from other groups; a lack of trust in healthcare providers, concerns about historical instances of research abuse and the importance of prayer were cited.Conclusion: This study provided insights into barriers to study participation, and also highlighted the need for pharmaceutical companies and other entities to authentically engage in strategies that build trust within communities to enhance recruitment among diverse populations.Patient or Public Contribution: The data collected in the present study was provided by the participants in the focus groups.

Background: Copay cards are intended to mitigate patient out-of-pocket (OOP) expenses. This qualitative, exploratory focus group study aimed to capture patient perceptions of copay cards and copay adjustment programs (CAPs; insurers’ accumulator and maximizer policies), which redirect the copay card utilization benefits intended for patients’ OOP expenses.

Patients' perceptions of their interaction with pharmacists can affect how they use this resource for chronic disease care. This qualitative study explored pharmacist-patient interactions and patients' perceptions of pharmacists' roles in cardiovascular disease (CVD) and inflammatory bowel disease (IBD). Patient volunteers, recruited through Janssen's Patient Engagement Research Council program, completed a 15-minute prework survey before a 90-minute live virtual focus group session to provide feedback on pharmacist-patient interactions, the pharmacist's role in patient care, and recommendations for improvement. In total, 27 patients participated. Amongst patients with CVD (n=18), 56% were female, 61% aged ≥65 years, and 39%/39% Black/White. Of those with IBD (n=9), 56% were female, 89% aged 25-44 years, and 33%/56% Black/White. In the CVD cohort, patients conversed with their pharmacists at least monthly, on average. Patients were generally happy with their relationship with their pharmacist, viewing pharmacists as a trusted resource for medication information. Polypharmacy was common in the CVD cohort (mean, 10.8 medications). For patients with IBD, pharmacist-patient interactions were less frequent, relationships were generally perceived as transactional, patients took fewer medications (mean, 3.2), and felt uncomfortable discussing their disease in public. All patients (CVD and IBD) were unaware of pharmacists' medical training/knowledge. Recommendations included private spaces for sensitive conversations, phone/text support, in-depth regular check-ins, and proactive communication to highlight that the pharmacist's role is to provide patient-centered holistic care. This research demonstrates a lack of understanding of pharmacist training, accessibility, and role among patients with chronic disease, and highlights opportunities to amend delivery of care. These insights can be used to inform strategies and approaches tailored to address unique needs of specific patient populations to enhance pharmacist-patient interactions.

We describe discussions about the lung cancer treatment decision-making process across the patient journey from the perspective of patients and caregivers with diverse experiences of living with lung cancer. Patient preference studies show individuals with lung cancer usually favor more aggressive treatments despite adverse events (AEs), in pursuit of better survival. However, patients are frequently passive in treatment decisions, suggesting there are barriers impairing patients' abilities to engage in shared decision-making. To explore this further, we asked patients with epidermal growth factor receptor-positive lung cancer and their caregivers to complete surveys and participate in focus group discussions facilitated by research specialists. US patients with lung cancer (n = 11) and caregivers (n = 4) took part in exploratory focus groups. While initial treatment decisions were mostly led by healthcare providers, participants became more engaged in their treatment over time. As in other studies, participants prioritized survival over AEs when selecting treatments and shared fears of being switched to less efficacious treatments or reduced dose if they disclosed AEs. Participants emphasized the importance of shared decision-making, early discussions about AEs, and access to patient advocates. Healthcare providers should distribute reliable educational materials and have early conversations with patients on individual lung cancer treatment, health-related quality of life goals, potential AEs, and distinguishing AEs from disease progression symptoms.

Background and Aims: An exploratory focus group study was conducted to better understand the needs of patients living with generalized myasthenia gravis (gMG).Methods: US‐based adults with gMG and caregivers of patients with gMG participated in a Patient Engagement Research Council between August 2022 and January 2023. The study consisted of a 15‐min prework survey, followed by virtual focus groups facilitated using a semi‐structured interview guide. Data concepts were identified using conversational analysis and by direct observation. All transcripts were coded based on concepts using a qualitative research analysis program (MaxQDA).Results: 16 participants (13 patients, three caregivers) were recruited. Participants reported impact on daily activities, fatigue, and psychosocial problems. Many participants experienced delayed diagnosis and difficulty accessing specialist care. Participants described multiple barriers related to their gMG, including barriers to treatment, access‐related issues, and communication disconnect between patients and healthcare professionals. Achieving stable disease was the most important goal. There was a preference for the autonomy of self‐administered medications at home versus infusions. Study insights led to recommendations to guide patient and healthcare professional education.Conclusion: The study illustrates the need to improve access to specialist care, achieve earlier diagnosis, prioritize patients' preferences in disease management, and develop treatments that improve outcomes without additional burden.Patient or Public Contribution: The data collected in this study was provided by the focus group participants, which included patients and caregivers of those with myasthenia gravis.

Multiple myeloma (MM) is a common hematologic malignancy, but due to its incurable nature, patients experience many relapses in their lifetime and hence face unique challenges. This mixed-methods study consisting of an online survey and subsequent focus groups aimed to understand how social and identity experiences affected the diagnostic, treatment, and care journey for patients with MM. Twenty-three adult patients with MM participated in this study. The survey participants identified common determinants negatively impacting their health, including mental health concerns (experienced by 90.5% of respondents), worries about food shortage (42.9%), and transportation concerns (28.6%). Focus group participants described high physical and mental health burdens associated with MM. Frequent monitoring, fear of a relapse, and unpredictable side effects contributed to high anxiety. Participants indicated that MM differed from other types of cancer and chronic health conditions in many ways, particularly how and where the diagnosis was made, disease progression and relapse, treatments and side effects, and financial concerns. Most participants (65.0%) reported ≥1 social need that negatively impacted health outcomes including lack of knowledge about MM, financial instability, and lack of insurance, transportation, and social support. The findings reveal that patients with MM continually experience patient-specific mental and physical health burdens indicating high unmet needs throughout the disease journey.