Patients Have A Seat At The Table. Do They Have A Vote?

At Health Datapalooza in Washington, D.C., a panel explored how patient participation could evolve within the “patient data” movement—from a model of being heard to having real influence. Donna Cryer, Andrea Downing, and Erica Olenski discussed aligning patient expertise with specific purposes and questioned whether involvement should extend to decision-making. Cryer argued that a vote on FDA committees is more meaningful than simply having a voice, drawing on her experience as an FDA patient representative who both prepared, supported, and compensated participants and served on committees where members had votes. Downing called for stricter measurement and evaluation of patient partnerships, while Olenski described how caregiving experience helped her navigate healthcare systems. The discussion highlighted the challenge of developing patient expertise without turning participants into professional advocates.