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Making clinical trial information more accessible

Dr. Heather Cheng wins NCI award to develop new ways to translate and educate patients and providers
Photo of Dr. Heather Cheng in the clinic
Dr. Heather Cheng Photo by Robert Hood / Fred Hutch News Service Click for high-resolution image

The information that a cancer patient needs to understand and the process they need to go through to enroll in a clinical trial is complicated — both to safeguard patient safety and to ensure the quality of the research.

Dr. Heather Cheng of Fred Hutchinson Cancer Research Center recently won a Cancer Clinical Investigator Team Leadership Award from the National Cancer Institute to make that information more approachable. Cheng, an associate professor in the Clinical Research Division and associate professor of medical oncology at the University of Washington School of Medicine, will be working on translating genitourinary, or GU, cancer clinical trials into new formats — short, “tweet”-friendly descriptions, short videos and other content — that are more patient-friendly.

Cheng’s research focuses on improving the care of patients with prostate and bladder cancers. An expert in prostate cancer genetics, she studies ways to use genetics to guide molecularly informed care of prostate cancer patients and their family members who may also be at high risk for the disease.

The additional focus of translating clinical trial information in new ways is also for referring health care providers, who help patients navigate their diagnosis and disease and are key to identifying potential opportunities to participate in clinical trials.

The award will allow her to carve out a portion of her time to work on the idea, likely starting with five to 10 trials of the many that she and her colleagues are part of.

Helping patients be better informed

“What we do is fairly complicated … the steps that it takes for the referring provider to recognize, to remember, to then quickly be able to digest the gist of the study, recognize that somebody is eligible and then direct them to the next steps to enroll is much harder than you might otherwise think,” Cheng said in a recent interview. “I think we can do better in terms of awareness and education — and simplifying complex trial eligibility lists may really help everyone.”

She said that while ClinicalTrials.gov is a great resource for information, patients and care providers are increasingly using social media and other platforms to consume information. These new platforms provide an opportunity for content that is more easily digestible and help patients be better informed along the way.

“This work will also focus on how we use technology to expand some of the exciting initiatives we're already working on,” Cheng said.

That technology is not just with new communication platforms but also new scientific advances, such as molecular tumor boards and single-cell sequencing that create data that needs expert interpretation to inform potential treatments and clinical trial opportunities.

“The interpretation becomes even more valuable and important,” she said. “Can we figure out how to do that using technology to help with dissemination? Can we educate people in videos or web-based formats?”

Scale to other disease types

She said that by distilling the information about the clinical trials into a simplified, visual format we will be required to be “as accurate and concise as possible" to engage patients and providers. This distilled information can then be the basis of new content formats that will be approved by the center’s Institutional Review Board just like any other clinical trial information. The new content “won’t replace the type of detailed information on ClinicalTrials.gov but will help drive patients and their care teams to cancer consortium clinical trials in a more targeted way,” she said.

Cheng said they will then evaluate the new content to understand whether it is improving understanding with the intended audiences, and then refine as they learn what works. She said building the process for developing the distilled information and then educating the researchers will be a key part of the work.

If she can show effectiveness of the new formats and communication avenues for GU cancer clinical trials she is hoping they can then be scaled to other disease types.

Additionally, this work will leverage new telehealth communication efforts that she and a colleague, Dr. John Gore, have also been working on that have become more relevant as COVID-19 has significantly impacted cancer treatment and clinical trials.

Cheng said efficient communication is crucial for clinical trials to educate patients and providers about study design, which means it is more likely patients can participate and research partnerships and advances can be made more rapidly.

“Time is of the essence when trying to find patients who are interested with the trials they are eligible for,” she said. “If the primary oncologists, patients or caregivers can understand and present the trial and share their enthusiasm, everything that follows is just made easier.”

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Last Modified, June 11, 2020