Editor’s note: This story is part of our 2022 PharmaVoice 100 feature.
Patient centricity has been a heightened goal in pharma for years — but LunaPBC is pushing the concept further by empowering patients to be involved more directly with research.
Co-founded by Dawn Barry in 2017, the California-based public benefit corporation provides a platform for participants with certain conditions to share health information, including genetic and health history records. This data is then leveraged in scientific studies including drug development efforts by pharma companies. In return, LunaPBC says it offers ownership shares in the company to users of the member-based platform.
Providing this kind of direct link between patients and researchers required visionary thinking, Barry’s nominator says.
“[Barry] witnessed the desperation of patients who said researchers weren’t asking the right questions and heard the frustration from researchers that they didn’t have representative data,” Barry’s nominator writes. “A technology bridge where patients could be elevated from subjects of research to partners in discovery was clear.”
Knowing that privacy would be a large concern for users, LunaPBC promises that health data never leaves the platform “without permission” and is “never sold.” Barry hopes that particular aspect of the platform will inspire more patients to come on board.
“With the support of technology and the rights that people have today, the issue is now convincing people that there is value in making that connection with researchers, and then actually delivering the value promised,” Barry says. “In changing the ecosystem of relationships, I think we can also get closer to higher quality discovery.”
Barry says throughout her career, she’s gravitated to entrepreneurial roles including “small companies, new and emerging market development, and moonshot teams.”
“I strive for ‘my brand’ to be about integrity, loyalty, authenticity, positive impact through consistent actions and a positive attitude.”
President, co-founder, LunaPBC
“These environments call for a leadership style where a clear vision is set, but how you get there needs to be very flexible, and the team who gets you there must be talented, creative, resilient and motivated toward their own personal growth,” she says.
Undoubtedly, establishing a disruptive business model had its challenges, particularly in terms of winning over investors. But by the end of 2021, Barry’s nominator says the company had “strong booked revenue, large-scale pharma deals and patient communities onboarding regularly — all without a sales or marketing staff.”
So far, Luna has been particularly appealing to patient advocacy groups. According to Barry’s nominator, more than 50 communities have been hosted on Luna’s platform and most are tied to patient advocacy groups representing a range of conditions — from mental health to women’s issues. All told, patients from more than 180 countries have participated in about 20 studies.
Undeterred by the disruptions caused by the pandemic, Barry says the challenges have given her an opportunity to “hone her resilience and galvanize the bond of the team.”
“The last couple of years have unpredictably unfolded to points where it felt like nothing was a constant, everything was a variable,” she says. “But we all grew, learned and are now even more tested, making it easier to maintain good energy levels and positivity through future challenges.”
Outside of office hours, Barry leverages her position to help develop the next generation of STEM professionals.
“I love connecting people. I go beyond mentoring those incoming and early career professionals to the workforce, bringing them into trusted networks of kind, high-performing individuals,” she says.