Partnering for Cures—Channeling the Power of the "P" in Patient-Centricity
A critical question for the medical research community: How do the organizations involved assemble an effective set of data-organization tools to collect, evaluate, and integrate patient input into an already complex ecosystem? Efforts like the Medical Device Innovation Consortium's Patient Centered Benefit Risk Assessment have begun to catalog the suite of available tools. This panel discussion examined participants' experiences in using new ways to capture and interpret data to improve outcomes.
Stacey Chang, a veteran of the design and innovation firm IDEO and now at the University of Texas, Austin, uses the tools of design, sociology, and psychology to understand what people really need to establish a more inclusive and effective healthcare system. Others, like Peter Margolis from Cincinnati Children's Hospital and Dana Ball from T1D Exchange, are building networks and platforms where patients engage with each other and aggregate their personal health information into powerful datasets. These can be used to drive both medical product development and delivery of care.
Also discussed among the panelists were the ways large, established organizations are affecting the culture shift required for embracing patients as partners. Pharmaceutical firms are deploying new systems; for example, Pfizer's Roslyn Schneider created a new position for herself as the "Global Patient Affairs Lead." She is educating staff members at all levels of the company to ask two questions, early and often: "What do patients think?" and "What are we doing about it?" The U.S. Food and Drug Administration has been evolving as well, and the agency's Jeffrey Shuren related that while "patients have always been at the heart of what we do, now we need to get patients engaged in how we do it."
Once new tools and habits are in place and organizations are refocused, remaining is the challenge of how to engage effectively with diverse patient populations to understand their views, needs, and preferences. Ball underscored the need to "make sure you are reaching the outliers, not just the Type A patients who may quickly reach a consensus [on their needs] ... that consensus may not be relevant to other patients." Margolis echoed this assessment: "It's like the PTA: some people want to be president, and others are fine with just driving the carpool."
Chang's work in design has led him to view all customer and patient populations on a bell curve. While most people fall in the middle, he has found that this average part of the population isn't necessarily the best place to seek out the insights required to build the ideal product. Individuals at the extremes of the curve are so focused on their needs that they can clearly put into words what works, what doesn't and specifically why. Using an especially colorful anecdote, Change described his work at IDEO to design a new shoe. While the average customer can put on a shoe and quickly know its level of comfort and aesthetic appeal, he or she doesn't necessarily have the vocabulary to explain to a designer why he or she feels that way. To reach the required level of detail, IDEO spoke with podiatrists who could describe the underlying physiology of why a new shoe they just put on was comfortable or not. To better understand the aesthetics of a shoe, they sought out foot fetishists who have a very deep emotional connection with how feet look in shoes and have a rich vocabulary to describe those feelings. Chang is now adapting such approaches to redesigning healthcare delivery by making sure that he includes input from people at the edges of the current system, such as illegal immigrants who fear going to a hospital and city bus drivers who may have a longitudinal view of the health in their community, based on how their regular riders change over time. As Chang was concluding this anecdote, McCleary commented, "This was probably the first time that both the PTA and foot fetishists were both discussed in a session on how to improve healthcare!"
Looking toward the future, the panel spoke about how to maintain momentum. Schneider encouraged everyone to "just get started," with Ball agreeing that "we should not let the best be the enemy of the good enough." Shuren closed out the session saying that he wants to help develop "not just an army of patient advocates, but an army of patient scientists."