insights hub: Case Study

Patient conversations reveal nuanced barriers and facilitators to clinical trial participation among breast cancer patients

How online patient narratives about clinical trials can complement current evidence-based practices

OVERVIEW

There is robust research and evidence that reveal consistent barriers, facilitators, and motivations for patients’ participation in clinical trials. The Salura Health research team sought to understand what additional insights online patient-to-patient conversations would reveal about the decision to participate in a clinical trial, and whether they would align with traditional research on the topic. Salura’s Patient-Centric Intelligence™ (PCINT) analyzed real patient stories and uncovered nuanced decision-making patterns and motivations that can be combined with current practices to enhance patient engagement efforts.

THE QUESTION

What do patient conversations reveal about clinical trial decision-making in breast cancer?

The Salura Health research team sought to understand how breast cancer patients make decisions about participating in clinical trials through social media posts, forum conversations, and blog posts. Traditional research in this area is vast and has informed effective strategies to increase participation; however, these strategies may not be applicable to all patients, depending on the stage of cancer, life circumstances, socioeconomic status, and the healthcare system with which they’re interacting.

The team suspected that patients’ authentic online conversations about their experiences contained rich, contextual information about decision-making processes unique to patient-to-patient interactions. Insights from these conversations could be valuable for improving trial design, patient education, and enrollment strategies for trials sponsors, research sites, and clinical trial organizations. Insights like these are intended to inform clinical trial strategy development and augment industry best practices, and are not meant to replace peer-reviewed research.

THE METHODOLOGY

Leveraging best-in-class research tools to capture patient voices in real-time

Through PCINT, Salura analyzed the experiences of approximately 90 breast cancer patients (out of thousands of related conversations), discussing their clinical trial experiences, treatment decisions, and concerns about participation in their own words and environments. This analysis identified decisional influences, information sources, participation barriers, and motivational factors. The analysis used traditional qualitative research methods to produce a detailed insights report featuring findings related to trial participation patterns and verbatim patient quotes to reinforce key findings.

THE SOLUTION

Comprehensive insights into clinical trial decision-making patterns

The PCINT analysis revealed similar decisional influences to those reported in peer-reviewed literature¹: the desire to help others, potential treatment arm (placebo vs treatment), the recommendation of their physician, and potential side effects.

The online narratives also revealed dynamics that may be unique to the online context:

Some patients actively engage with clinical trial information without making a decision to participate. These patients often serve as information brokers and community advocates, sharing trial information with others while not participating themselves due to their disease stage or eligibility.

Patients discuss the burden of the trial schedule in relation to the convenience of the standard of care in great detail, often discussing specific trials at specific healthcare centers and the logistics they encountered in their treatment. This reveals a tendency to use online spaces to understand the real-life implications of participation beyond what is shared by the care team.

There was evidence that physicians dismissed patient-initiated trial inquiries with standard responses, suggesting a provider-patient information asymmetry where motivated patients encountered physician resistance to changing treatment plans.

Online communities serve as sophisticated treatment analysis spaces, providing more than just emotional support. Patient communities are functioning as informal medical advisory boards that may compete with or complement physician guidance.

Patients simultaneously hold both motivated and skeptical beliefs about clinical trials, suggesting cognitive ambivalence as a normal part of the decision-making process.

These findings reveal clinical trial participation as a social phenomenon embedded in networked communities where patients serve as information brokers, advocates, and peer educators rather than making purely individual medical decisions. While traditional peer-reviewed research is the essential foundation for understanding trial participation, online patient conversations give a window into patient-to-patient conversations that can reveal nuanced decision-making patterns and increased specificity about barriers and facilitators to participation that may not emerge in traditional studies. Pharmaceutical companies can now leverage both established evidence-based practices and these rapid, targeted insights from patient narratives to inform more effective trial design and operations.

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Avis NE, Smith KW, Link CL, Hortobagyi GN, Rivera E. Factors associated with participation in breast cancer treatment clinical trials. J Clin Oncol. 2006 Apr 20;24(12):1860-7. doi: 10.1200/JCO.2005.03.8976. PMID: 16622260. Link. ↩︎