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P215: Understanding the Patient Experience: Health Inequities, Community Engagement, and Clinical Trial Participation

Poster Presenter

Mary Elmer

Executive Director, Patient Engagement for Oncology
Merck & Co., Inc.
United States

Objectives

The objective of this research was to understand inequities in healthcare experienced by a diverse group of patients and explore strategies to overcome barriers to clinical trial participation, including leveraging community engagement.

Method

Research was conducted with a diverse panel of patients in terms of medical condition, race, ethnicity, education, age, gender, SES and geography. Patients completed asynchronous exercises and focus groups to explore perceptions and experiences with the healthcare system and clinical trials.

Results

Patients were asked qualitative questions by a researcher about how their communities, culture, and personal background and characteristics (such as race, gender, education, SES, health insurance status) impacted their healthcare experience and perceptions of clinical trials, as well as their perspectives on community engagement strategies. Data collected revealed patients experienced disrespect and dismissive behavior, which impacted clinical trial perceptions. They described feeling isolated and on the outside of a system they could see but were unable to access. Further, patients felt providers may withhold treatment options and clinical trial opportunities from some patients, based on a variety of stereotypes related to assumptions about potential adherence, comprehension, and interest. Concerns with clinical trials stem from historical mistreatment and dismissiveness, which is reinforced by the blinded structure of most trials, as well as perceived financial burden of participation. Patients describe community, diversity, and healthcare as highly interconnected. Healthcare choices, including clinical trial participation, are highly influenced by culture, with patients seeking connection with providers and peer support. Family dynamics, generational influences, religious beliefs, and cultural factors can create misconceptions and barriers to clinical trial participation. Patients are aware of efforts to increase awareness and participation in clinical trials among underrepresented groups. However, they reported that those efforts are not effective in meeting their needs and are perceived as superficial. Patients may be suspicious of generalized outreach and pharmaceutical company involvement. Patients advised that community engagement focus on peer-to-peer exposure, especially from those within their existing healthcare related communities, would be most successful. Therapeutically-aligned communities and leaders hold the most credibility.

Conclusion

Many patients continue to have discouraging and negative healthcare experiences. They feel like outsiders to a health care system that does not meet their needs nor understand their unique perspectives. Those fears and suspicions carry over into their perceptions of clinical trials and community engagement efforts. Understanding the structural barriers and unconscious bias within the system is critical to making progress towards increasing diversity in clinical trials. Furthermore, our research suggests that current efforts to address diversity, equity and inclusion are missing the mark. While patients are aware of those efforts, they may feel the efforts lack substance and do not resonate with their cultural or lived experiences, understand their needs, or address their concerns. Lack of understanding, awareness and access to clinical trials persists; specifically around patient responsibility, purpose of the trial, insurance or financial participant requirements as well as benefits such as high-level monitoring of healthcare, access to specialists and novel treatments, and high degree of attention from care providers. Support services may also vary such as technology skills and support, support communicating details of participation with family members, and assistance navigating logistics such as medical records retrieval. Additionally, community engagement should not be generic. Outreach should be therapeutically aligned, peer to peer and from within the patients’ own communities. Ultimately, we conclude that understanding the lived patient experience and their experience within the health care system has a direct impact on their willingness to participate in clinical trials. Truly meeting the needs of patients and the development of meaningful programs and outreach can only be achieved through in-depth, direct patient and community involvement.