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. Understanding these patterns would be valuable for improving trial design, patient education, and enrollment strategies across the industry. Insights like these are intended for marketing strategy development to augment 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 influences and motivations to those reported in current peer-reviewed literature: providers are highly influential in the decision to participate, treatment-seeking drives participation more than altruism, and potential side effects are a significant barrier.

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 weigh the burden of the treatment schedule against the convenience of the standard of care, not just its efficacy. This reveals a sophisticated decision-making process where patients evaluate the logistical and lifestyle impact as much as the medical outcomes.
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 evidence-based research provides the essential foundation for understanding participation barriers and motivations, online patient conversations capture nuanced decision-making patterns based on specific factors like risk tolerance, family dynamics, and the intersection of hope and fear that don’t 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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