Why human-centered design is vital in healthcare research  

The Fast Company Impact Council is an invitation-only membership community of leaders, experts, executives, and entrepreneurs who share their insights with our audience. Members pay annual dues for access to peer learning, thought leadership opportunities, events and more.

At the Exceptional Women Alliance, we enable high-level women to mentor each other to achieve personal and professional happiness through sisterhood. As the nonprofit organization’s founder, chair, and CEO, I am honored to interview and share insights from thought leaders who are part of our peer-to-peer mentoring program. 

This month, I’m pleased to introduce Roslyn Schneider, MD, a physician, and driver of person centeredness in healthcare, medical education, and the biopharmaceutical industry. She has practiced medicine as a pulmonologist, launched blockbuster medicines while at biopharmaceutical companies, and worked with companies and coalitions to embed patient and community involvement across the medical product development and commercialization lifecycle. Here is some of what we talked about.

Q: What inspired you to focus on human-centered design in healthcare, research, and medical product development? 

Roslyn Schneider, MD: My personal and family encounters with our healthcare system, clinical practice during the height of the AIDS epidemic, and seeing the value of partnerships with patients as lived experience experts, have been my greatest influences.  

As a child I was misdiagnosed, in large part, because physicians dismissed concerns from my parents who were immigrants with little formal education, but who knew there was something wrong.  

As an adult, I practiced and taught at a New York City hospital in the 1980’s and 90’s when we had limited treatments for HIV infection. People who were in the prime of their lives were dying, battling a poorly understood, devastating illness, and the community challenged the pace of medication development and access. I saw the power of their advocacy and activism with businesses, health authorities, and researchers, at the intersection with medical practice and science. That power resulted in transformation of a uniformly fatal illness, to a chronic illness in much of the world today, and it forever changed how medical products are developed, approved, and accessed. 

These experiences were front and center for me, as my teams have partnered with patients and patient organizations in an intentional, iterative manner, from the early stages of development and at key points in its lifecycle, for as long as a particular product is available.

Q: What’s the role of physician and community engagement in precision medicine?  

Schneider: During my four decades since graduating medical school, medicine has become increasingly precise. Deliberately engaging with patients who are lived experience experts, will help us ensure that these treatments are not only precise, but personal. Precision therapies, whether in clinical trials or commercially available, are specifically aimed toward genetic or other targets. We must be careful not to fall so in love with the science, that we don’t consider how participation in the clinical research or use of these products may or may not fit with people’s health goals and life goals. Maintaining community relationships, active listening to understand care gaps and preferences, co-creation, and prioritizing outcomes that matter most to patients are critical as we develop all types of medicines and medical technologies. 

Q: You’ve been a leader in and a consultant for small, medium, and large-sized global companies. Where is the industry compared to its patient-centric goals, and what might we expect in the next decade? 

Schneider: It’s tempting to be satisfied with how much more patient engagement there is in medical product development now compared with earlier days, but we are not yet where we need to be. In periods of resource constraints and economic pressures, companies might, shortsightedly, consider reducing their engagement with patients as partners to achieve savings. There’s a regression of thinking that this is somehow non-essential to successful outcomes for patients and for businesses. That happens despite the financial models of the value of patient engagement, and many real-life examples of shortened business timelines, reduction of costly, avoidable amendments to clinical research protocols, and more favorable product labeling, and more effective patient support programs.  

Data from the Tufts Center for the Study of Drug Development are consistent with what I hear from professionals and patients in relevant working groups I participate in. Data show that most companies today are piloting or sometimes implementing patient-centered elements in clinical development, yet the minority are doing so routinely.  

“Patients are waiting” is an outdated slogan. I have confidence that lived experience experts and professionals across the globe will continue to find innovative ways to embed patient engagement into standard processes and utilize metrics that will resonate with stakeholders and decision makers at the grassroots level, the executive suite, and in the boardroom. 

Larraine Segil is founder, chair, and CEO of The Exceptional Women Alliance. 

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