Background Researchers are encountering increasing challenges in recruiting participants for palliative and healthcare research. This paper aims to understand challenges to and methods for engaging physicians and seriously ill patients and their caregivers in research studies. Methods Between October 2019 to July 2020, we conducted qualitative interviews with 25 patients, proxies, and caregivers participants who were eligible for a randomized controlled trial of home-based palliative care and 31 physicians from participating accountable care organizations. Using thematic analysis, we analyzed participants’ responses to identify concepts and key ideas within the text. From these initial concepts, core themes around barriers to research and preferred research recruitment approaches were generated. Results Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers’ offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events. Conclusions Findings demonstrated that although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a consistent barrier to research involvement.

Researchers are encountering increasing challenges in recruiting participants for healthcare research. We conducted semi-structured individual interviews to identify participant barriers to research and recommendations for overcoming these challenges. We recruited 17 patients and eight caregivers who were approached to participate in a randomized control trial. We also recruited 31 primary care physicians. Using grounded theory, three researchers independently coded the transcripts and then met to compare codes and reconcile discrepancies. Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization and repetitive questions. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included various recruitment techniques. Physician recommendations were related to incentives. Although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a barrier to research involvement.

To understand primary care providers’ (PCPs) experiences with referring patients to home-based palliative care (HBPC), we conducted individual, key-informant interviews with 31 PCPs. About half participants were male (54.8%), White (42.5%), US-born (58.1%), and were 57 years old (SD=9.17), on average. About one-third of participants (32.3%) indicated they refer 10+ patients annually to HBPC, while most (80.7%) reported “strong” comfort discussing palliative care with patients. Qualitative analysis revealed three prominent thematic categories, each related to barriers PCP experienced when referring patients to palliative care: (1) PCP-level (lack of knowledge and comfort); (2) perceived patient-level (culture, family disagreement, need, home-based aspect); and (3) HBPC program-level (need to close the loop with PCP, insurance coverage, program availability, and eligibility). PCP recommendations for overcoming identified barriers will be discussed. Findings hold important implications for timely patient-referrals to palliative care by PCPs and for sustaining palliative programs that rely on these referrals.