‘Patient centricity’ is a widely used term in the clinical trial and healthcare industry. It’s on company websites, in mission statements, and conference titles. But speak with many patients and a very different picture emerges. The term often feels like a label rather than a lived value. It sounds promising but lands flat. So, why does ‘patient centricity’ frequently feel more like a PR move than a real commitment?
When we peel back the language, it becomes clear that the intent behind ‘patient centricity’ doesn’t always align with patient experience. The intention behind the term aims to put patients’ needs, experiences, and perspectives at the heart of research and care. But despite the positive intent, many patients find that the term rings hollow, feels like jargon, or even seems performative rather than genuine. Patients report feeling like passive subjects, not active contributors. Information is often one-way. Decisions are made before their voices are heard. As one participant put it to me during a recent call, “If this is what patient-centred means, it doesn’t feel very centred on me.”
Actions Don't Always Match Words
Patients judge the trial based on their experience, not on the terminology that trial coordinators use. In many contexts, patients feel that the term is just being used as shorthand for vague good intentions rather than measurable behaviours. Patients notice when a trial is built around sponsor priorities, even when the language implies otherwise. What’s missing is the follow-through.
Patients can tell when the trial has been designed with patient input on burden. They are discouraged by complex consent forms and poor communication during and after the trial. They feel forgotten about when they don’t receive feedback on the results of the trial. Combined with inconvenient site locations and schedules, these actions lead to patients feeling like a data point rather than a person.
Real patient centricity means shifting who gets a say and when. Patients should help shape protocols before they’re final. They should be consulted not as an afterthought, but as co-creators. The optics of patient engagement have improved, but optics are not the same as outcomes. It’s possible to conduct a patient survey and ignore the results. It’s possible to build advisory boards that don’t influence a single decision. That’s what leads to patient experiences that feel impersonal or burdensome, and makes the label “patient-centric” feel contradictory or even insulting.
Who is Defining "Centricity"?
Who coined this term? Were patients involved when the industry embraced it? We often see the term defined by the industry for the patient, which inherently isn’t patient-led. This leads to patients feeling like research is being done to them rather than with them.
The term implies a passive recipient. The idea of being placed at the center can sometimes subtly imply that the patient is a passive object around which the industry revolves, rather than an active partner or collaborator. Patients want to be active partners in research, not just be the focus of it.
The term also lacks tangible impact. Patients are asking, “What does ‘patient centricity’ actually mean for me?” “How does it make my trial experience better?” If the term ‘patient centricity’ doesn’t improve the patients’ practical aspects of participation, it lacks substance and becomes just medical jargon that patients begin to ignore.
The Impact: Erosion of Clinical Trial Trust
When the term ‘patient centricity’ is overused or used inappropriately, it devalues genuine efforts that are being made elsewhere in the industry. It contributes to patient skepticism about industry motives. Patients think, “If this basic communication feels off, what else might be?” And if patients feel that the language is vague and insincere, they will be less likely to engage, trust the information they are given, or even decide to never participate in any clinical trial.
Clinical trial trust isn’t built by saying the right thing. It’s built through relationships, transparency, and time. One good way to build it is to keep patients informed—not just before and during, but after the trial ends. Share results in plain language. Acknowledge the value of their participation. It shows patients they’re seen, not just used.
Trust also grows when patients feel safe to speak honestly. Focus groups and interviews should not be treated as boxes to tick. They should be opportunities to listen, adapt, and improve. Researchers should ask: What barriers do you face? What would make participation easier? And then, importantly, act on that information.
Respect is More Than Representation
It’s easy to assume that having a diverse patient panel means your trial is inclusive. But token representation isn’t respect. It matters how patients are brought into the process. Are their views valued equally? Are they paid for their time? Are they given feedback when their suggestions are taken—or not?
Respect shows up in how trial sites are selected. It shows in how burdensome protocols are. It shows in whether translation services are available. These practical things speak louder than branded slide decks about inclusion.
Patients notice when logistics ignore their realities. A trial that requires three visits a week may not be possible for someone juggling childcare and a job with no paid leave. Designing around real lives means considering those constraints from the start—not as an afterthought when recruitment numbers fall short.
It also means giving patients room to say no. Highlighting their needs doesn’t mean pushing participation at all costs. It means offering clear information, genuine choice, and support if they opt out.
Moving Beyond the Buzzword Towards Authentic Partnership
The words we use shape expectations. We can’t just say we are patient-centred, we have to speak in a way that reflects that. Often, the language of clinical trials is formal, cold, and technical. It doesn’t invite conversation. It creates distance.
Focus on actions, not labels. Shift the focus from saying “we are patient-centric” to demonstrating respect and value through concrete actions. Co-design protocols with patients, simplify materials, provide clear and consistent communication, offer flexible scheduling, compensate fairly, and ensure easy access to trial results summaries. These are just a few ways to make patients feel more like partners.
Use clearer, more direct language. Words like “partnership,” “collaboration,” “respect,” “listening,” “valuing patient experience,” and “reducing burden” are more active and relational.
Show, don’t just tell. Instead of claiming centricity, show how patient input has directly led to changes. “Based on feedback from patient advisors, we changed this in the protocol,” or “We developed this simplified guide based on patient recommendations.”
Embrace transparency. Be honest about trial requirements, potential burdens, and what is being asked of participants. Authenticity builds clinical trial trust.
Create feedback loops. Actively solicit feedback and report back to patients on how their input is being used (or explain why it couldn’t be). This closes the loop and shows their voice matters.
Acknowledge patient expertise. Recognize patients as experts in their own lived experience. Frame involvement as a collaboration between different kinds of expertise (medical/scientific and experiential).
When patients say ‘patient centricity’ doesn’t feel genuine, we should believe them. Their feedback is not an attack—it’s an invitation. An invitation to do better, speak more clearly, and show more respect. That begins with honest listening and ends with shared outcomes.
Keith Berelowitz | Founder & CEO
Keith Berelowitz is the Founder of pRxEngage, a company redefining patient engagement and retention in clinical trials using living experience, proven methods, and AI.
