Cure, Google Gemini
Overview
Patient advisory boards can inform high-stakes decisions, or erode trust if poorly designed. Experts share how to structure boards that deliver credible insights patients and investors take seriously.
Patient advisory boards, when done well, offer a direct line to the people who matter most to a new biotech or healthcare company. They can surface what patients and families actually want, what they’re experiencing day to day, and what they hope will change.
When they’re poorly designed or under-supported, though, advisory boards can do real damage. Patients may leave frustrated or questioning a company’s motives, a risk no early-stage biotech can afford. That’s why structure and intent matter from the start.
Below, experts explain what separates high-functioning patient advisory boards from those that fall short, along with a practical roadmap for building durable, credible relationships with the people your company aims to serve.
What Makes a Good Patient Advisory Board?
At its core, a patient advisory board exists to provide firsthand insight into patient needs and expectations. That starts with recognizing patients as experts in their own experiences. Their perspectives will vary, sometimes sharply, but shared themes tend to emerge.
Strong advisory boards also surface blind spots in products, strategy, or culture. This kind of unfiltered feedback is hard to get any other way. The prerequisite is trust. Advisors need to feel they can speak openly, without fear of correction, dismissal, or judgment. When that happens, the insights can materially shape a company’s direction.
Here are seven ways to make sure it does.
1. Know When a Formal Board Is Warranted
Not every startup needs a formal patient advisory board. Creating one too early, or without a clear purpose, can do more harm than good. Before investing the time and resources, be explicit about the decisions you’re trying to inform.
“Create an advisory board when your decisions would be expensive, time-consuming, or nearly impossible to undo,” said Ron Tilles, MBA, interim CEO and board member at Pyros Pharmaceuticals. “Usually, that’s post-concept, between seed and Series A.”
A formal board becomes essential once patient input is expected to inform clinical trial design, endpoints, inclusion or exclusion criteria, risk–benefit framing, regulatory strategy, or market access assumptions, said Mark D. Brezzell, MSCP, founder of MDB Liveconnext LLC.
“At that point, structure, documentation, and consistency matter, both internally and with regulators and investors,” he said. If patient insights will appear in an IND, protocol, or investor deck, a formal board is no longer optional.
For earlier, exploratory needs, informal approaches may be more appropriate. Surveys, listening sessions, focus groups, or one-on-one interviews can be faster, easier for patients, and still informative. What matters is follow-through. Patients notice quickly when their input goes nowhere.
2. Build for Constructive Disagreement
Selecting the right mix of patients, caregivers, and community representatives is critical. Boards that are too homogeneous or agreeable tend to reinforce blind spots.
“My rule of thumb is that you want patient advisory board members to debate,” Tilles said. “If everyone agrees too quickly, the board is poorly constructed.”
He recommends thinking in terms of decision lenses rather than demographics, with a general mix that looks like this:
Patients (50 to 60 percent): A range of disease severity, including at least one atypical or rare comorbidity.
Caregivers (20 to 30 percent): Especially important in pediatric, neurological, oncology, and chronic degenerative diseases, where caregivers often describe burden more reliably.
Community members or advocates (about 10 percent): To provide perspective on access, stigma, and reimbursement realities.
3. Compensate Fairly Without Creating Pressure
Compensation signals that you value advisors’ time and expertise. It also helps establish trust early. At the same time, it needs to be handled carefully.
You should never tie compensation to agreement or continued participation if opinions change, Tilles said. Make it clear that critical feedback is expected and valued, and consider using a third party to manage the process.
Avoid repeated “gratitude bonuses” and keep advisory work separate from testimonials or promotional activity, Brezzell added. “If compensation would raise concerns in a compliance review, it’s likely inappropriate.”
Industry norms are well established. Patients and caregivers typically receive $100 to $250 per hour. Community members and advocates often receive $150 to $300 per hour. Paying fairly and consistently supports independence and credibility.
4. Run Meetings That Respect People’s Time
If advisory board meetings feel inefficient or disconnected from outcomes, participation and insight will suffer. Most patients and caregivers are balancing health needs alongside work, family, and other obligations. Their time is limited.
Respect that by keeping meetings focused and purposeful. Use clear agendas, define what decisions are on the table, and limit pre-reads to what’s essential.
“The most effective boards are run like high-quality clinical meetings, not focus groups,” Brezzell said. “If an insight doesn’t require live discussion, don’t force it into a meeting.”
When In-Person Meetings Can Backfire
In-person meetings can introduce dynamics that distort input, said Michael Taylor, CEO of SchellingPoint, an applied research firm specializing in group decision-making for a variety of entities including early-stage biotech companies.
“In-person meetings [can] create dynamics that are counter to the research objective,” said Taylor. “People want to contribute and will echo someone else's input. They will [also] share thoughts they are comfortable expressing in front of others.”
According to Taylor, this means there are often multiple blockers at play when meetings are held in person such as:
Not wanting to be seen as too negative, so mentioning one or two problems or concerns, but not wanting to mention a third, fourth, or fifth.
Not wanting to be seen as disagreeable or uncollaborative, so carefully choosing when to disagree with another person's input.
Not wanting to appear relatively weak or inferior in the group, so holding back thoughts they don't feel safe enough to share.
Not wanting to be seen as an outlier. This causes them to watch for the edge of the group's conversation and stay away from it.
Not wanting to be judged as being wrong. When faced with experts and inferences that peers know more than they do, they hold back consequential thought for fear of embarrassing themselves. Some get around this by starting with, "This might be silly, but..."
“These are all signals of reduced personal safety,” Taylor said. “No in-person meeting eliminates them. It often creates them.”
If you do meet in person, assume the output is incomplete. Taylor recommends pre- and post-meeting anonymous virtual input, which allows participants to share fully without social pressure.
5. Document Insights in a Way Investors Trust
For patient input to carry weight beyond the room, it must be documented clearly and credibly. Investors look for traceability, not anecdotes.
“Effective documentation shows the questions asked, the methodology used, and the themes that emerged,” Brezzell said. Avoid cherry-picked quotes. Instead, show patterns, trade-offs, and how decisions changed as a result.
Tilles recommends standard formats, such as a one-page insight memo with clear action, no-action, and open-question sections. Decisions should be easy to trace. “We changed X because patients told us Y,” he said.
“Also, no marketing speak, no buzzwords, just quantifiable patterns and themes across patients,” he said. “Transparently show where patient input conflicted with clinical or commercial goals.”
6. Be Explicit About Privacy, Consent, and Boundaries
Trust depends on how clearly you handle privacy and expectations. Advisors often share experiences that go well beyond medical records, so safeguards need to be explicit.
Be clear that advisory boards are not clinical studies unless IRB coverage is in place, Tilles said. Use plain language to explain how insights will be used, and never imply access to therapy, trials, or preferential treatment.
Collect only what you need, anonymize aggressively, and draw clear lines between advisory work, advocacy, and endorsement. Blurred roles create regulatory and reputational risk.
Brezzell also stresses scope clarity. Advisors are not study subjects, clinicians, or owners of IP. Written consent should spell out how input will be used, how confidentiality is protected, and what advisors should expect in terms of follow-up and visibility of impact.
7. Avoid These Common Mistakes
Even well-intentioned boards can fail. Tilles and Brezzell flagged six recurring founder errors:
Over-scripting feedback, which limits authenticity.
Asking “does this make sense,” a question that steers answers.
Treating advisors as marketing assets rather than sources of challenge.
Ignoring inconvenient input.
Failing to close the loop on how feedback was used.
Creating a board too late, after key decisions are already locked.
“Patient advisory boards are most valuable when founders are willing to hear what complicates their assumptions, not what confirms them,” Brezzell said.
