Doctor’s Personal Story Searching for Clinical Trial, and How Disclosure Can Improve Search Results

Due to her frustration in trying to find a clinical trial for her husband, Dr. Bess Stillman now helps other patients match and enroll in clinical trials, and recently helped draft legislation that will improve clinical trial recruitment and retention by encouraging a more patient-friendly clinical trial landscape.

Dr. Bess Stillman

Bess Stillman is an ER doctor and writer turned patient advocate after a frustrating two-year search — taking a leave of absence from her job to devote 12 hours a day to the task — to find a clinical trial for her husband, Jake, who was diagnosed in April 2023 with tongue cancer (recurrent metastatic head and neck squamous cell carcinoma). He did not respond to Keytruda, prompting her search for a clinical trial. She shared her experience — and her frustration — in a heartfelt keynote speech at the TrialScope EXTRA 2025 clinical trial disclosure event in New York City.

Stillman was seven months pregnant with their child when her husband succumbed to the disease at age 39. She now helps other patients match and enroll in clinical trials, and recently helped draft legislation that will improve clinical trial recruitment and retention by encouraging a more patient-friendly clinical trial landscape.

Although a physician, Stillman said, “The problem was the process was much more frustrating than I had any expectation of.” Her first step was to visit ClinicalTrials.gov (CTgov), which she said became quickly overwhelming.

She then went online to a physicians network that she is a part of, including oncologists, hoping that someone would point her in the right direction. “But it very quickly became obvious that most doctors didn't have a particular trial in mind,” she said.

Stillman shared with each doctor a dossier for her husband, including his name, his age, his history, his ECOG (Eastern Cooperative Oncology Group) score, prior lines of therapies, any pertinent genetic markers, and other relevant details. Each physician did a search and, out of 10 docs, each sent a different list of trials. “This felt very ominous to me,” she said.

So Stillman conducted her own searches on CTgov with results ranging from 31 to 6,895 trials. “And in that haystack,” she said, “we were trying to find the needle that was going to keep Jake alive. By the time I looked through all of those, Jake’s life expectancy would have been over.”

Keywords are key

“The lack of keyword standardization started to drive me a little bit crazy because I realized that choosing the right study was the difference between maybe keeping Jake alive long enough to meet our daughter.”

She explained the keyword discrepancies and the number of different study results they found:

• Cancer of the head and neck – 4,283 studies
• HNSCC – 1,532 studies
• Squamous cell carcinoma of the tongue – 106 studies
• Tongue cancer – 152 studies
• Oral cavity SCC – 661 studies
• SCC of the oral cavity – 31 studies

Another source of frustration was that different drugs came up differently during her search. Sometimes it would be the scientific name (petosemtamab)  vs. the study name (MCLA 158, a trial Jake eventually got into), and Stillman said she didn’t know at the time if they were the same medication. “So it was a very, very scary time early on, and I didn't know what to do.

“So honestly, we just felt alone and adrift without any clear guidance. The oncologist that we spoke with seemed confused. The other doctor seemed confused. I was definitely confused.”

Stillman said that when she went back and talked to the physicians who had helped her, “most of them pivoted and said, ‘Well, the best thing to do would be to pick a hospital system first and then just see what trials they have. And if they have a trial that works for you, great. And if they don't, then that's pretty much it.’”

But Stillman was not ready to give up the fight.

The challenge of establishing care

However, Stillman said they didn't really have other hospital systems they could just go to because Jake had not established care there yet; he wasn't a patient. Establishing care, she explained, means that the patient has to have a chart at the hospital and have had an appointment. “Otherwise, you basically don't exist as a person.”

She noted that when patients are at the point of trying to find a clinical trial, they have usually failed their general therapy, and oncology patients like Jake are receiving chemotherapy, which can be physically draining, to prolong their life. “So he really only had one, maybe two, trips in him to establish care at a hospital in order to try to find a trial,” she explained. That’s why narrowing down the trials first before traveling to the sites to do eligibility tests was incredibly important. The trials with the most comprehensive criteria were the most useful.

Stillman did come across a woman who consults for drug companies bringing new pharmaceuticals to market. Because of her access to paid databases and her familiarity with more of the study drugs, she was able to create a ranked and much more manageable list of 150 trials. “But 150 trials was still about 125 too many for us to really get a handle on,” Stillman said.

“The scary thing,” she added, is that the consultant missed one study for an immune checkpoint inhibitor injected directly into solid tumors. At the time, Stillman said, Jake had very superficial tumors that were amenable to ultrasound-guided injections.

Confusing inclusion/exclusion criteria

To complicate matters, Stillman said there seemed to be a lack of standardization in eligibility criteria. The eligibility criteria for one study allowed two prior lines of therapy, but did not clarify whether an additional dose of a prior line counted. “As we went through the process later and we were getting into our second trial, we were having larger, longer lines of prior care,” she said. “One of the challenges we had was trying to figure out how many prior lines of care were allowed for a clinical trial and what was considered a prior line of care, whether or not an additional dose of chemotherapy that he'd had previously would count as a third line of therapy. We couldn't find that in a lot of different studies.”

Stillman said that Jake was ready for the additional dose of chemotherapy before the two-week “washout” period to clear his body of the drug before testing another drug in the clinical trial. So they had to decide whether he could take the life-prolonging dose or risk becoming ineligible for the trial and going back to square one.

Reaching out to get additional trial information also was problematic for Stillman. “Having something that I could look at on ClinicalTrials.gov or on a study-sponsored website would have been so helpful,” she said, such as a website for the study drug specifically so people interested in the trial can use predetermined keywords to find up-to-date information. This would also help let oncologists know which patients are eligible.

Thomas Wicks, Head of Transparency Operations at Citeline, noted that CTgov only requires updates for enrollment status changes within 30 days, which doesn’t work for patients like Jake where time is of the essence. Stillman agreed, saying there is a downstream effect of eligibility: A patient can lose a spot for one trial and lose eligibility for another.

Breakdown in communication

Stillman said there seems to be a lack of communication across the board among the pharmaceutical companies, the primary investigators, the oncologists at the same hospital site, and oncologists at other hospital sites. She noted that only 0.2% of oncologists actively refer their patients to clinical trials, mainly due to a lack of access to trial information.

She said even clinical operations staffs lack information; one study team had to double-check eligibility criteria at its own site. “I think that if there were some sort of central repository like a trial website, then it would really help with outreach,” she said.

She emphasized that the need for updated information is crucial. For example, a new arm of the trial was opening and the old lines of therapy eligibility were different. “The difference between life or death for Jake, the study ended up getting him an additional five months of life that he was able to write and make videos for our daughter … things that we wouldn't have had otherwise, simply because a piece of information was missing,” she said.

When asked about the use of plain language to describe clinical trials, Stillman expressed concern that watered-down language could actually make it harder for patients to find trials. The danger of oversimplifying, she warned, is that it makes it easy for patients to miss details that could determine their eligibility. Details such as how many participants are in an ongoing study and any adverse effects could also help patients determine whether a trial is a good fit for them.

“Right now,” she said, “it feels a little bit like you have to figure out the secret knock to have the door open and you knock and you knock and you knock and you just don't find it.”

The responsibility of disclosure professionals

Addressing the clinical trial disclosure professionals in the room, Stillman said, “I would just argue that figuring out how to share the right information and do it in a way that's easy and streamlined, and not hidden behind a bunch of different websites, will make everybody's lives easier. It's good for the drug companies, it's good for patients, it's good for oncologists. I think it would just change the entire clinical trial ecosystem.

“So I think you have a lot of power, if you really think about it, you have a lot of power when you're deciding what to disclose. … It's life-or-death decisions that you're making.”