Social Listening in Action: What Inspire Found in Breast Cancer Posts
Health-related quality of life (HRQoL) is central to understanding how people live with cancer. But traditional tools—like surveys and interviews—have limits. They’re time-bound, burdensome, and often miss the nuance of day-to-day life. Inspire’s recent study asked a simple question: Could organic, unstructured conversations in our breast cancer community yield the same depth of insight as validated HRQoL surveys? The answer was a resounding yes.
The Study Design
Inspire partnered with academic researchers to explore this question. The study compared two data sources from 134 U.S.-based female members of Inspire’s breast cancer community:
- Forum Posts: 2,669 member-generated posts and comments across 24 months
- Validated Surveys: EORTC QLQ-C30 and QLQ-BR23 questionnaires completed by each participant
The goal: Determine whether unprompted discussions in the community could provide reliable answers to standard HRQoL measures.
What We Found
1. Real Conversations Mirror Real Surveys
- 613 posts (23%) contained direct, mappable HRQoL insights
- Human coders matched 50 out of 53 survey questions with at least one relevant post
- The match quality was high, with an average F1 score of 0.7 (up to 1.0 for some questions), indicating strong agreement between post content and survey responses
2. Patients Talk About What Matters Most
The most frequently discussed quality-of-life issues were:
- Feeling unwell
- Pain
- Worry
- Tension
- Limitations in daily activities
These were not prompted topics—they were what patients chose to talk about. That matters. It confirms that these themes aren’t just checkboxes—they’re lived experiences.
Why It Matters
This study proves that patient-generated content on Inspire isn’t just anecdotal—it’s measurable, codable, and deeply aligned with the issues that shape quality of life in cancer.
Key Advantages Over Traditional Methods:
- Scalable: Insights are drawn from thousands of posts without new data collection burdens
- Low-burden: Patients aren’t asked to “report”—they’re simply sharing
- Timely: Trends can be tracked in real-time as patients respond to new treatments or stages
- High-fidelity: Rich, emotional, and context-laden language provides layers of meaning
Real-World Applications
This approach opens the door to:
- Supplementing or validating HRQoL measures in real-world evidence (RWE) studies
- Identifying emerging patient concerns earlier than traditional methods
- Building more resonant communications, support programs, and interventions
- Guiding the design of trials that reflect how patients actually live with disease
The Takeaway
Inspire’s breast cancer community is more than a support network—it’s a living, evolving dataset. By listening to what patients are already saying, we can capture the nuance of their journey and turn it into actionable insight—without adding burden, introducing bias, or missing what matters most.
Inspire makes it possible to turn conversations into confidence, and community into clarity.
If you’re ready to explore how social listening can strengthen your brand, protocol, or evidence strategy, get in touch.