Five Key Things We Want You to Know About Participants
More than half of clinical trial participants never find out how the study they took part in turned out. That numbers comes from CISCRP’s 2023 global study of over twelve thousand respondents, and it has stayed roughly the same since 2017. The participant donates their time, their body, and even their data, yet at the end of it, they return to standard care without a follow-up letter, email, or phone call. Just like that, the trial closes, and they are not part of what happens next.
We have been having conversations with people on that side of the trial for years. The ones who stayed, the ones who left halfway, the ones who almost did not start at all. What keeps surfacing is the same finding. The gap between how a trial is designed and how it is lived is doing more to determine retention than nearly any operational lever pharma teams have already pulled.
What follows are the five things we keep hearing inside that gap. If you design or deliver clinical trials, they are likely shaping numbers in your studies right now.
FIVE THINGS WE KEEP HEARING FROM TRIAL PARTICIPANTS
Each of the reasons listed here came up across patient interviews, advisory panels, and the post-experience workshops we run with R&D and clinical teams. They are not insights we invented for this post. They are real observations we collected and translated into something we hope pharma teams can use moving forward.
They are not medical professionals
Clinical trial documents are written for regulators, lawyers, and clinicians. They are often handed to people who are none of those things. The majority of US adults read below a sixth-grade level, and yet most informed consent forms are written at a high school or undergraduate reading level. The result is a document that the participant signs but does not fully process.
What this looks like at the kitchen table is a forty-page form full of words like ‘randomization’, ‘washout’, and ‘contraindication’. The participant absorbs the magnitude of what they are agreeing to long before they absorb the specifics. By the time their first visit arrives, they are still catching up on what they consented to in the first place.
Their reasons for being there are not your reasons
Pharma is about collecting data to find out whether a drug works. Participants are hoping the drug will work so they can have their life back. Both things are true at once, but most of the friction in trial communication comes from forgetting that.
CISCRP’s patient perspective survey found that 75% of participants joined to help future patients, 69% to improve their own quality of life, and 63% to access the best possible care. Hope is doing a lot of the work that the protocol assumes the science is doing.
When the experience inside the trial does not meet that hope, people leave. Not because they stopped believing in the science, but because the science stopped feeling like it was for them.
Small operational changes hit them like big ones
A venue change, a new questionnaire, an extra blood draw, a shifted appointment window. To a sponsor, these are minor amendments. To a participant, each one means rearranging childcare, calling an employer, finding a new route, or rebuilding the schedule they spent two weeks defending to their family. IQVIA reports that protocols have seen a 139% increase in procedures, a 214% rise in endpoints, and a 600% surge in data points collected per study since 2005. None of that complexity gets absorbed without someone, somewhere, paying for it.
Unfortunately, the cost compounds in both directions. Tufts’ research puts the median direct cost of a substantial Phase III protocol amendment at $535,000 per occurrence. The amendments that are individually inconvenient for participants are also the ones quietly bleeding budgets and timelines. They share the same root cause: a design that did not fully account for the person at the end.
They live with uncertainty as a constant companion
In a placebo-controlled trial, a participant does not know whether the medication they are taking is doing anything. They feel symptoms and try to read meaning into them. They feel side effects and wonder whether to mention them, or whether doing so might disqualify them. Qualitative research confirms that randomisation, placebo allocation, and trial closure each carry their own weight of psychological burden, with allocation to placebo specifically described as producing “disappointment, anger, and depression.”
We have heard the same thing in our own conversations. The lack of control is constant. It runs underneath the appointments, the diaries, the bloods, the calls. It is part of the trial experience that no operational fix can touch, because it is not an operational problem.
What they are giving you is worth more than the data line
Imagine a hypothetical. Mid-trial, the data show the investigational drug is causing organ damage in some participants. The team notes it, adjusts the next protocol, and moves on. For the participants experiencing the damage, there is no “next protocol.” They simply face a decision that the trial design did not account for. Either stay on the drug and absorb side effects that may be nearly as serious as the condition itself or drop out entirely and lose whatever benefit they were hoping for. Human rationale would suggest reducing the dose, but the trial parameters make that impossible.
That kind of moment does not show up in the dataset. It affects the lives of the people who agreed to be part of the science. We have written about the real-world impact of trials on participants because it is the part of the conversation that is most often skipped. The data comes from people, and those people deserve to be understood, not just managed.
How we help teams close this gap
Most trial teams know all of this in the abstract. The challenge is that knowing it and feeling it are two different things, and only one of them changes how a protocol gets written. Our work begins with closing that distance.
Through immersive patient simulations built around real participant stories, we put the people who design and deliver trials inside the experience for a full working day. The interactive elements include a smartphone app that disrupts their schedule, a physical kit that mimics symptoms and trial procedures, and live role-plays with trained actors. After the experience, the embedding workshops translate what they felt into specific decisions they will make differently.
Our work in clinical trials includes a dedicated experience built around an asthma patient’s journey through trial participation. In one recent client engagement, the experience was used as onboarding for new R&D recruits and as a perspective shift for existing teams transitioning into trial-facing roles. Participants left advocating for fewer in-person visits, lower-burden biomarkers, and a different conception of what they owed the people inside their protocols. We have also written more broadly about patient-centricity in clinical trials, outlining what the term means and where it tends to fall short.
If you want to feel a version of this for yourself before committing to anything bigger, our Interactive Showcase is the fastest way in. It is a free thirty-minute session that gives you a real taste of how the immersion works and what it does to the way teams think about trials afterward.
Better trials begin where the protocol meets the person. The teams that can see both at once tend to design the ones that work.
Join our interactive Showcase
If you design, manage, or deliver clinical trials, our Interactive Showcase is a free thirty-minute session that gives you a direct sense of what immersive patient simulation does for the way teams think about their work. It is the lightest way to see the approach in action before committing to anything larger.
Contact us to find your slot, or to talk about a tailored experience built around your therapy area, your protocol challenges, and the participants you depend on. Better trials begin with a better understanding of the people inside them.
Frequently Asked Questions
What are the most common reasons patients drop out of clinical trials?
The reasons we hear most often are logistical burden (travel distance, time away from work, cost), physical discomfort from procedures or side effects, confusion about trial processes and expectations, and the sense of being processed rather than supported. Many withdrawals are voluntary rather than medically driven, and they are usually the product of strain accumulating across all of those factors at once.
How does patient burden affect clinical trial outcomes?
Higher patient burden correlates directly with increased protocol deviations, more amendments, longer cycle times, and higher screen failure rates. Research shows that avoidable amendments driven by overly complex protocols cost sponsors an average of $453,932 per occurrence, and more than 80% of trials globally fail to enroll on time.
What is the A Life in a Day Interactive Showcase?
Our Interactive Showcase is a free, 30-minute session that gives pharma and clinical professionals a firsthand sense of how our immersive patient experience works. It is the easiest way to see the approach for yourself before committing to a full programme. Our complete experience lasts up to 24 hours and combines a smartphone app, a physical kit of simulation items, and live role-play calls with trained actors.
Who is the Interactive Showcase designed for?
It is built for anyone involved in the design, delivery, or management of clinical trials. That includes R&D teams, clinical operations, medical affairs, CRO staff, patient recruitment leads, and L&D professionals responsible for building patient-centric capability inside their organisations.
How long does the full immersive experience last?
The full experience runs for up to twenty-four hours, woven into the participant’s normal working day. It is followed by embedding workshops where teams translate what they felt into specific, role-relevant commitments. The Interactive Showcase, by contrast, is a shorter, 30-minute version designed to give a quick sense of the method.
What measurable outcomes have clients seen from this experience?
In one engagement with over two hundred R&D staff, 94% told us the experience would change how they approach their trials. Clients have reported improved protocol designs that reduce patient burden, stronger retention strategies, and more empathetic communication with the people inside their studies.
Can the experience be tailored to a specific therapy area or trial protocol?
Yes. We work with clients to design experiences grounded in real patient stories from the specific therapy area in question. The simulation content comes from in-depth patient interviews and reflects what living with the relevant condition actually looks like for the people inside the trial.
How does A Life in a Day differ from traditional patient centricity training?
Traditional training delivers information through slides, workshops, or e-learning. We deliver understanding through lived experience. Participants do not learn about the patient perspective in the abstract. They feel it physically and emotionally, which produces a depth of insight and motivation that conventional training cannot match.
