PATIENTS' DATA POWERING PROGRESS

Grossman Brings a Diverse Perspective to the RARE-X Board

Cynthia Grossman, the newest addition to the RARE-X board, says she’s “obsessed with the potential of health data to advance research and wellbeing by connecting individuals, communities, and systems.”

Grossman is a director at Biogen and leads a large-scale real world evidence network for the company that generates and collects standardized patient data during patient visits at participating centers to enable research that could lead to new discoveries.

“She has the patient front and center in everything she’s always done. She understands the patient’s role and the opportunities and responsibilities that patients have,” said RARE-X Co-Founder and Executive Director Nicole Boice, who has served on several advisory boards with Grossman. “When we talked about RARE-X, she was someone who believed that this could be transformative and make a difference for patients.”

Though Grossman has a Ph.D. in clinical psychology, her career has carried her from the National Institutes of Health, to the nonprofit FasterCures, and now to Biogen. If there’s been a theme that runs throughout Grossman’s work, it has been the opportunity she’s seen to advance research and patient wellbeing by connecting individuals, communities, and systems through data.

“We’re all swimming in data. We’re all producing it, and we’re all consuming it every day. What I’m obsessed with is its power,” she said. “If we collect it more thoughtfully, if we share it more conscientiously, then it does have the power to connect at the individual level, at the community level, and at the systems level. RARE-X is uniquely positioned to do that.”

Grossman graduated Phi Beta Kappa from Earlham College with a B.A. in psychology and biology and earned her Ph.D. in clinical psychology from the University of Vermont. She received a National Science Foundation Incentives for Excellence Scholarship, an NIH Ruth L. Kirschstein National Research Services Award, and a Postdoctoral Fellowship in Pediatric Psychology at the Warren Alpert Medical School of Brown University.

At the NIH, Grossman found herself at the intersection of community engagement and biomedical research as she worked to find a way to get community voices taken seriously within the context of biomedical research. She found that measurement skills and scientific methods she developed from her doctoral work could be applied to collecting data more systematically and bring a level of rigor to that element of the work.

But it was during her time at FasterCures that Grossman became engaged with the rare disease patient community as she worked on collaborative efforts to bring rare disease patients together to improve their understanding of their own health data.

Right now, Grossman believes that the challenge around health data is both having data at volume and knowing what data is actually meaningful.

“RARE-X is just in that sweet spot, which is asking, ‘How do we bring meaning to the data?’ Because when someone owns the data and they can say, ‘I’m going to share this,’ you’re not just sharing the data, you’re sharing a connection with that person,” said Grossman, “And that person brings with them all the context needed around that data.”

 

 

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