Clinical Trials Built for Humans: Trust, Transparency, and Representation

Executive summary

Ebonie Michelle and Barry Nelson’s clinical trial experiences expose a pattern biopharma teams feel downstream in enrollment, retention, and evidence credibility: trials succeed or fail on trust, timing, and whether patients are treated as people, not as protocol numbers. The opportunity is not a system overhaul, but fixing the specific, recurring moments where trust is built or broken.

Why this matters now

Clinical trials are often framed as a matter of eligibility criteria and protocol design. In practice, a patient’s care team determines whether they reach the point where trial participation is even possible. Once a trial is on the table, what determines whether a patient enrolls, stays, and trusts the process enough to advocate for it afterward?

Ebonie and Barry’s stories suggest the answer has less to do with science and more to do with design: who gets offered a trial, how clearly it is explained, what it feels like to participate, and what happens when it ends.

Trial eligibility has a closing window

Ebonie was direct about a gap she and Barry both experienced: once a person starts on treatment, the window to enroll in certain clinical trials closes. Clinicians know this, yet neither Barry nor Ebonie were initially offered a trial, despite healthcare institutions having no hesitation asking for tissue samples for research. Her account reframes the usual explanation for that gap. She has heard clinicians hesitate to refer patients to trials out of fear of losing them as patients, whereas the real question should be whether a physician would rather lose their patient as a patient, or lose them for good.

The problem is not one of patient persuasion. It is a timing and workflow problem. Trial consideration needs to happen early enough that it is still a viable option, not a conversation that starts after standard treatment has already closed the trial window.

Tolerability is a trust issue, not just a side-effect issue

Tolerability is usually discussed in strictly clinical terms: can a patient withstand the side effects for long enough to find out whether the treatment works. Barry’s story suggests a second, less visible version of the same question: can a patient tolerate the experience of being in a trial, separate from what the drug itself is doing to their body.

Barry eventually did participate in several clinical trials. He shared that in his first trial he suffered from significant side effects and ultimately the trial didn’t work for him. However, he was treated well, trusted in his team, and was encouraged to keep considering trials, which he did.  Later when he entered his third different trial—this time for an immunotherapy treatment—it ended up changing his cancer trajectory entirely.

The open question for biopharma is what made continued trial participation possible. Barry answered it himself when comparing his three trials: one felt so procedural that he described feeling like he was just a sequence of numbers and letters, while in the other two he “felt like a human.” He was explicit that this affects participation and outcomes, not just comfort. Fortunately, in his first trial, he felt heard and valued as a person. So even though he had experienced miserable side effects in this trial, he did not categorize it as a brutal experience. Instead, he stayed in the ecosystem and tried again. Being treated as a person mattered more than the clinical impact alone.

Tolerability, in other words, is not only a clinical variable, but a retention and re-enrollment variable. One bad trial experience does not have to close the door on future participation, but whether a patient trusts the next site, team, or process to be different often decides whether they walk back through the door.

The site is not the whole story

Barry told a story from a chance waiting-room conversation during the COVID-19 pandemic. A woman in a long-running trial, seven or eight years in, wanted out, not because of the treatment, but because her closest friend was moving away and she did not want to spend her remaining time as a trial participant instead of a friend. Barry shared his own trial experience with her and encouraged her to think about what staying meant, for herself and for others without the same access to care. She stayed and later thanked him through her care team.

Barry’s own takeaway was pointed: too much focus during clinical trials is placed on the site, and not enough on the patient’s full experience before, during, and after participation. A trial is not only a protocol. It is a period of a person’s life that intersects grief, relationships, and everything else happening around it.

Transparency has to work at the back end too

Angela Wheeler, session moderator, shared a caregiver’s perspective from her own family. Her mother was in a clinical trial that worked well for her personally but received a closing note stating only that the trial had failed and was being stopped. Her mother did not understand what that meant if the treatment had worked for her, and the confusion left her uncertain she would ever consider another trial.

Ebonie’s response named the underlying issue directly: gatekeeping has no place in clinical trials, because the relationship has to be reciprocal, and reciprocity requires patients to have equitable knowledge and equitable agency, not decisions made on their behalf. Transparency, in this framing, is not a one-time event at consent. It is a full-lifecycle design requirement, including how results, including disappointing ones, are explained back to the people who took part.

Representation is a design requirement, not a demographic footnote

Ebonie was specific about why she described herself as a clinical trial ambassador. Ebonie cited that Black participants make up less than 5% of clinical trial populations, despite differences in biology, experience, and culture that meaningfully affect the cancer journey. She lost her mother to stage 2 breast cancer at a time when survival rates were far lower than they are today, and she now advises on trials in Chicago focused specifically on recruitment and retention for Black women, who are roughly 40% more likely to die of breast cancer.

Her recommendation to clinicians was not to avoid the history. Instead, it was to confront it directly: acknowledge the historical and cultural context, then explain current ethical standards and safeguards clearly enough that patients understand they are protected. Leaving trust to chance, in her view, is a direct cause of the lack of diversity in trial participation.

Geography compounds the problem. Ebonie’s grandmother lived in a town where the nearest oncologist was more than 30 miles away, a distance that shapes whether a trial is even a realistic option long before questions of trust or consent arise. Representation, in this light, is not an outcome to hope for. It has to be built into recruitment strategy, site selection, and access design from the start.

What the model looks like when trust works

Barry now serves informally as a clinical trial advocate, offering to answer questions from people considering trials—not to convince them, but simply as someone who has lived through it. That role reflects that patients trust other patients, and trust is difficult to manufacture through materials alone.

Barry’s clearest example of what that trust makes possible was his relationship with the scientist behind his immunotherapy trial, who reviewed his scans, reacted to his tumor shrinkage, and invited him to meet the lab team. When trust, transparency, and representation are working, the relationship between patient and science stops feeling transactional and starts feeling human.

Biopharma levers, one program at a time

You cannot redesign the clinical trial ecosystem across every site. You can reduce predictable breakdowns across the programs, sites, and workflows your trials touch:

• Build trial eligibility screening and education into care workflows early, before standard treatment forecloses participation
• Design consent and trial communication for two-way transparency, including plain-language explanation of outcomes, not only risks, going in
• Treat tolerability, site experience, and human connection as retention variables in protocol and site design, not secondary considerations
• Fund and structure patient-ambassador and peer-navigator models so prospective participants can hear directly from people who have been through it
• Build recruitment and retention strategies that confront cultural trust barriers and geographic access gaps directly, rather than treating representative enrollment as something that will resolve on its own

The takeaway for biopharma

Ebonie and Barry did not ask the field for sentiment. They asked for the same thing this series has surfaced from the start: operational respect. Trials designed around timing that respects the patient’s window of options, communication that treats patients as capable of understanding their own care, and site experiences that account for tolerability and connection, not only enrollment speed.

For biopharma, trust, transparency, and representation are not soft goals sitting alongside trial design. They are trial infrastructure. They determine who enrolls, who stays, and whether the resulting evidence holds up as credible and representative under scrutiny.