Suzanne Harris , 2025-04-18 13:00:00
If someone asked if your company or product was patient-centric, you would likely respond with an enthusiastic yes. Let’s probe a bit deeper…
When was the last time you asked a patient to contribute to trial design? Have you ever asked a patient to contribute to a protocol? If you’re being honest, most of us would say rarely or never.
Nearly every life sciences, clinical operations, and patient advocacy conference features sessions — even keynotes — on the benefits of patient-centricity. Many big pharma, biotech, medical device, and clinical research organizations (CROs) employ Chief Patient Officers. Yet, according to the NIH, more than 90% of studies are delayed due to failed enrollment or challenges in patient retention. This equates to over $40 billion in unrecoverable losses.
Something doesn’t add up?
For me, it’s personal
I am one of the lucky ones. I work with a team who intentionally surrounds itself with patients’ voices — with my own voice being one of the loudest.
For 13 years, I cared for two children born with eosinophilic esophagitis (EoE), a rare and once-deemed incurable disease. In 2003, no one knew what EoE was. Everywhere I turned, I was dismissed. Meanwhile, my children suffered. My marriage was strained. Our finances were in shambles. When I found the strength to look past my own circumstances, I realized many others were suffering, too.
Through patient advocacy, legislative efforts, and collaboration with researchers who valued my voice, I witnessed firsthand the incredible power of patient perspectives in transforming healthcare. And yes — my kids were cured.
A couple of years after this powerful transformation, I was diagnosed with Ehlers-Danlos Syndrome, Hypermobile type (hEDS). It only took 48 years! With every flare, healthcare providers minimized my symptoms and failed to listen to what I knew about my own body. Eight years after my diagnosis, I have yet to find an effective treatment or qualify for a clinical trial.
I have seen lives change at scale when patient-centricity is a priority. I have also seen a whole lot of nothing when patient voices are pushed aside.
All sides win
Patient-centricity isn’t an act of charity or kindness. Patient-centricity focuses on the best possible patient outcomes. This benefits patients, the clinical community and the entire healthcare ecosystem. What does patient-centricity look like in clinical research?
Engage patients early: Understand that I am one of your best sources of real-world data. Science alone will never tell you what it is like to live with my condition. Ask patients! We have so much to share — and we want to help.
- How you benefit – By engaging with me and others like me early in trial design — through patient surveys and panels — you can ensure that protocols align with real patient needs.
Educate and answer my questions: During clinical trial recruitment, provide me with a patient companion, as opposed to a recruiter or a pure AI tool. Connect with a real person who can speak my language, answer my questions, and guide me through the process while comforting me and easing my burden.
- How you benefit – By keeping me informed, easing my fears, and making me feel less “sold to” I am more likely to trust you — and more likely to consent to your clinical trial accelerating enrollment.
Adapt to my lifestyle: Ask me about my life, priorities, and time commitments. Consider how my lifestyle can inform and adapt protocols.
- How you benefit – Flexible study design improves patient adherence, decreases dropout rates, and increases likelihood to consent.
Diversity matters: Include diverse perspectives in all areas of clinical development.
- How you benefit – By improving diversity in clinical trials, you can ensure treatments are safe and effective for all people.
Check in on my emotional health: Illness affects emotional well-being. Chances are, I’m too overwhelmed to schedule visits with a therapist.
- How you benefit – Poor emotional health impacts adherence. Some treatments can also affect mental well-being. By checking in with me, I feel cared for — and I’m likely to stay engaged in a trial. In addition, you can collect evidence on mental health impacts of treatment.
Assess my tech stack: Technology can help collect health and clinical data, but don’t assume I am good with technology or even have access to any technology infrastructure.
- How you benefit – A technology assessment assures I am well equipped and well-trained to collect the data you need.
We are all in this together
Patient-centricity benefits the entire healthcare ecosystem. When we partner with patients:
- You save money.
- We solve real patients’ problems and address real patients’ needs.
- We ensure medications are safe and effective for all people.
- The people we love get access to life saving treatments faster.
Patients are waiting to help you. You can’t afford to turn them away.
Photo: LoveTheWind, Getty Images
Suzanne Harris is a patient advocate and Senior Vice President of Marketing & Communications at SubjectWell. SubjectWell challenges sponsors, CROs and sites to rethink patient recruitment by providing the most patient-centric solutions that address the greatest challenges in clinical development.
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