Cure, Google Gemini
Overview
Patient focus groups can surface powerful insight or quietly mislead early decisions. Experts share tips for biotech teams on how to design and run focus groups that generate real, actionable input while respecting patient autonomy.
Patient insight matters. Done right, it can help biotech founders build better products, develop stronger clinical strategies, gain credibility with investors, and provide more meaningful context for regulators. But early on, talking with patients can be difficult, particularly in focus group settings. When a focus group delivers little more than reassurance, teams risk heading down the wrong path and focusing on the wrong problems without realizing it.
According to Gisel Lopez, a clinical operations leader with hands-on experience running trials in neuromuscular diseases, founders often approach focus groups as a form of validation rather than discovery. “The most valuable sessions are the ones that make you uncomfortable early, before decisions are locked in,” she said.
Extracting that level of insight is harder than many founders expect. Traditional focus groups, often used in business or marketing contexts, don’t always translate well to biotech. Too often, they generate surface-level feedback that confirms existing assumptions instead of challenging them, especially when participants don’t feel safe being fully honest.
Poorly designed focus groups can also cause teams to miss what truly matters to patients, eroding trust and potentially harming the very communities they aim to serve. Avoiding these pitfalls requires setting realistic expectations, approaching sensitive questions with care, and steering clear of ethical missteps that can arise under pressure.
This guide offers a starting point for rethinking how patient focus groups are designed and run. When done well, they can become a powerful and ethical tool for early-stage biotech companies.
What Makes a Patient Focus Group Effective
In a well-designed patient focus group, participants feel free to share authentic thoughts and experiences, as well as disagree with one another and with the research team. That openness is what allows true unmet needs to surface.
“The goal is to hear lived experience, not random ideas,” Lopez said. “But you need clear rules at the beginning so everyone feels safe. People shouldn’t contradict someone else’s experience, but they should feel comfortable offering a different point of view.”
Because participants arrive with different backgrounds and levels of understanding, clarity matters. Using everyday language helps keep discussions grounded. Instead of saying, “We are evaluating the patient impact of the protocol schedule of events,” Lopez suggested reframing it as, “We’re deciding which tests you have to do, how often they happen, and whether they’re really necessary.”
Some topics are also difficult to discuss in group settings, particularly when participants don’t know one another. In those cases, one-on-one conversations can help build trust that later improves group discussions. Asking about daily routines, sources of stress, and what gets skipped or delayed can reveal insights that group dynamics might otherwise suppress.
Rethinking the Traditional Focus Group Model
Designing a focus group requires clarity about what founders want to learn and why. For Steve Brown, CEO and founder of CureWise, that often means moving away from traditional business-style focus groups altogether.
“Our approach has involved using AI in parts of the process, because everyone gets the same identical questions,” Brown said. “People are often more open and candid with AI. They’re willing to be vulnerable, and you can refine the process until it works well without bias.”
Brown noted that participants are sometimes more comfortable sharing sensitive information with AI than in a group setting, where others can influence responses. “People don’t feel judged by AI. They don’t feel like they have to put their game face on. That matters, especially in therapeutics.”
AI-based approaches can also be more scalable and cost-effective. Sessions can be conducted remotely, recorded, and standardized, reducing the influence of an interviewer’s tone or assumptions. “You can do it anywhere, and whoever’s asking the questions isn’t biasing the outcome,” Brown said.
How to Avoid Bias When Assembling a Focus Group
Bias often enters focus groups long before the first question is asked. Recruitment choices, question framing, and participant assumptions about what researchers want to hear all shape the outcome. Early-stage biotech teams are particularly vulnerable to these effects.
Recruitment should prioritize lived experience rather than diagnosis alone, said Ella Balasa, a patient advocate, consultant at Balasa Consulting, and member of the PCORI Rare Disease Advisory Panel. Disease stage, treatment history, caregiving roles, and prior research participation can all influence perspective. Partnering with trusted patient organizations can also support ethical recruitment and improve relevance.
Session design should emphasize psychological safety, Balasa said. Clear expectations, plain language, and grounding discussions in lived experience before introducing specific concepts all help create space for honest input.
“Strong focus groups explore real behaviors and daily realities, not hypotheticals or validation-seeking prompts,” she said. Facilitators should avoid leading questions, excessive context-setting, or defending ideas during sessions.
Intentional attention to diversity and accessibility also matters. Differences in lived experience often surface feasibility issues that would otherwise be missed, Balasa added.
How to Ask Questions That Surface Needs, Pain Points, and Daily Realities
The questions asked, and how they’re framed, determine the quality of insight a focus group delivers. Poorly constructed questions can quietly steer conversations away from what matters most.
In precision medicine, Brown noted, patient populations are becoming increasingly small. “Recruiting for focus groups starts to look a lot like recruiting for rare disease trials,” he said. “You need people who are willing to be open and candid. Without authenticity, you won’t get useful answers.”
That challenge is another reason AI-driven focus groups can be helpful when aligned with a company’s goals. Removing geographic barriers and reducing social pressure can encourage more honest participation.
“Traditional focus groups ask people to spend hours in a room together,” Brown said. “There are more scalable models now, whether that’s Zoom or interacting with an AI avatar. You gain control and scale at the same time.”
For founders working with small or geographically dispersed patient populations, online approaches may be the only practical way to gather meaningful insight.
How to Translate Focus Group Insights Without Overgeneralizing
When focus group insights inform decisions, they become invaluable. But there’s a risk of oversimplifying complex experiences into a single narrative, creating a false sense of consensus.
Instead, founders should look for recurring themes supported by multiple perspectives and resist drawing conclusions from isolated anecdotes. Qualitative insights can guide development without being stretched beyond what the data supports.
“It’s easy to design a focus group that confirms what you already want to hear,” Brown said. Remaining open to uncomfortable feedback requires humility, especially when funding pressure is high.
Still, meaningful patient engagement often means being willing to adjust course based on what emerges.
How to Compensate Focus Group Participants Fairly and Ethically
Compensation should be addressed upfront. Participating in focus groups often requires significant emotional labor, time away from care or work, and a willingness to share personal experiences that can be physically or emotionally taxing.
Limiting compensation due to budget constraints can reinforce power imbalances and skew participation. At the same time, compensation should not feel coercive. The goal is to strike a balance that respects participants without influencing their responses.
Transparency and alignment with patient community norms are essential, said Balasa. “Compensation should reflect participants’ time and expertise and align with patient engagement standards. Clear communication about how input will be used also matters.” She pointed to the NHC Fair-Market Value Calculator as a recognized tool for assessing appropriate compensation.
Five Common Pitfalls to Watch Out For
Even well-intentioned teams can run into challenges when conducting patient focus groups. Common pitfalls include:
Recruiting participants based on convenience or existing networks
Selecting participants with overly similar disease stages or experiences
Asking questions that validate existing assumptions
Overloading sessions with too many questions
Overinterpreting small sample sizes
Using leading questions instead of patient-centered prompts
Another frequent mistake is treating patients as data sources rather than partners. Patients are people whose time, experiences, and health deserve care and respect. Keeping that perspective front and center is essential to building focus groups that are both ethical and effective.
