The Patient Voice: The Missing Piece in Healthcare and Research

I’ve been in this industry long enough to witness firsthand how things have evolved—and how some things, unfortunately, haven’t. My career started at a small comunity based psychiatric clinic in a large urban market and has now brought me to a small border town in the desert Southwest. After years in research, including some consulting for pharma, CROs, and tech vendors, I realized that the patient voice was still not being heard, and that needed to change.

Let’s go back a few years to 2012-2020. I was tired of seeing big pharma companies host grand presentations on patient engagement with panels of six to eight people, and not one of them was an actual patient, and on the rare times that they were, they were paid "influencers" essentially being spoon fed the talking points. Other times, physicians would present the “patient perspective,” but their version often didn’t reflect the true patient experience. Many organizations still operate this way, relying on filtered feedback rather than the authentic voices of those living with the conditions.

Patients today hold more power than ever in healthcare. They’re the ones making decisions about their care, choosing providers, and accessing the medicines they want. The healthcare system, however, is struggling to keep up. Post-COVID, resources are stretched, and many have left the industry. And let’s talk about younger generations for a minute—they view healthcare like they do fast food. No long-term relationships with primary care providers; they prefer the convenience of telehealth or walk-in clinics. This fragmented approach often leads to people falling through the cracks, especially those with chronic conditions.

This scenario has opened up a tremendous opportunity in the white spaces between research and healthcare. I am unaware of any company that leverages technology to reach patients, especially those outside the traditional healthcare system that also services the clinical research space. We need an organization to dig into what’s really impacting their health: family stress, housing, job security, education, and even religious or cultural factors. It’s about understanding the whole picture, assessing risk, and getting help to those who need it most. If anyone is aware of any, please drop a comment and we would love to feature them at our next conference!

I firmly believe that empowering clinical research sites is key to boosting patient engagement and increasing diversity in trials. That’s why we launched the "Save Our Sites" conference, focused on equipping research sites to advocate for themselves and their patients. Engaging diverse communities requires meeting people where they are, in environments they trust. It was refreshing being able to meet and talk to so many of these sites at our inaugural conference this year and I hope we continue to build on this momentum going forward!

This isn’t just an issue for low-income populations—it affects nearly everyone, especially with the consolidation of healthcare. Private equity-backed groups are buying up hospitals and clinics, leaving fewer options for quality care. We’re seeing this not just in rural areas, but in cities too, making it harder for patients to find personalized care outside these large systems.

The future of healthcare depends on elevating the patient voice. Technology can help, but it must be used to genuinely support patients in their communities, not just add another layer of complexity. We’re not looking to fix the entire system overnight, but by making these incremental changes—starting at the community level—we can have a real impact. So, if you’re in this space, think about how you can contribute to making healthcare more patient-centered. The real change starts with us.