By Gwen Nichols, MD
Joining a clinical trial can be an important cancer treatment option, because trials offer patients promising therapies that potentially improve outcomes and quality of life. Clinical trials are not just a last resort when all other therapies fail.
Yet enrollment in clinical trials remains low. Only about 7% of cancer patients in the United States participate in clinical trials, and that number decreases dramatically among older adults, racial and ethnic minority populations, and rural communities.
The reasons are complex. Patients may have safety concerns, misunderstand what a clinical trial involves, or face geographical, financial, or other logistical barriers. Or they might not even know that a clinical trial is an option.
While many of these challenges extend beyond the exam room, healthcare professionals play a critical role in helping patients learn about clinical trials and when one could be right for them. By engaging in patient-centered conversations about clinical trials, you can educate and build understanding, address concerns, and potentially help more patients access them. Research shows that more than 50% of cancer patients agree to enroll in a therapeutic trial when given the opportunity.
But how does a busy healthcare professional broach the topic of clinical trials when time with patients is so limited? It’s one of many questions we address in the Cancer Clinical Trials Communication Skills training that Blood Cancer United developed in collaboration with the University of Florida College of Medicine and UF Health Cancer Institute. Though designed for hematology-oncology fellows, it offers strategies that can help all healthcare professionals discuss clinical trials with confidence, clarity, and compassion.
I recently spoke with three experts closely involved in this training, and asked them to share their best advice, culled from the workshop and personal experience.
Discuss trials early on and throughout treatment and care
Many people mistakenly believe clinical trials are only considered when standard treatments have been exhausted. In reality, they can be an option at different points in a patient's care journey. “By talking about them at the beginning and throughout the course of care you destigmatize the notion that trials are only used when there’s no more hope,” says Leah Szumita, MSN, Senior Director, Blood Cancer United’s Clinical Trial Support Center (CTSC). Early conversations lay the groundwork for a more informed conversation if a trial becomes appropriate and help patients feel more prepared to consider one when the time comes.
"Explain from the start that a clinical trial is just one treatment option that could be offered at any stage to allow access to an innovative therapy."
Carma Bylund, Ph.D., Professor and Associate Chair of Education at University of Florida College of Medicine
Use clear, simple language
Explain from the start that a clinical trial is just one treatment option that could be offered at any stage to allow access to an innovative therapy, suggests Carma Bylund, Ph.D., Professor and Associate Chair of Education at the University of Florida College of Medicine and Assistant Director Cancer Training and Education Programs at UF Health Cancer Institute.
Dr. Bylund suggests describing how trials typically work to ease fears about being part of research, and assuage patients’ worries about receiving a placebo.
“The way you talk about clinical trials matters,” she says. Using the phrase “receive treatment through a clinical trial” is clearer than saying “go on a clinical trial,” which sounds more like an experiment. “That simple change in wording can make a difference in helping to address some of the misconceptions, mistrust or safety fears that people can have.”
Ask open-ended questions
Posing questions like “What do you know about clinical trials?” or “Do you have friends or family members who have ever taken part in one?” can jumpstart a discussion and allow you to gauge patients’ understanding, treatment preferences, and feelings about trials.
“This can be a challenge as a doctor because you only have a limited amount of time to convey so many things in a visit,” notes Daphne Friedman, MD, a hematologist-oncologist with the Durham VA Health Care System and National TeleOncology Service, and professor at Duke University School of Medicine.
She provides educational information about clinical trials as part of the oncology practice’s resource packet and references it in regular conversations with patients and families to normalize the topic and help everyone feel more comfortable discussing trials. A nurse or advanced practice provider or educator in the clinic can lead these conversations too. “The key is to make it part of the regular routine,” Dr. Friedman says.
"Navigating the clinical trial process is very complex. Blood Cancer United's Clinical Trial Support Center (CTSC) is there every step of the way for patients and their healthcare teams."
Leah Szumita, MSN, Senior Director, Blood Cancer United Clinical Trial Support Center
Use clinical trial support resources
Blood Cancer United’s Clinical Trial Support Center (CTSC) can be an extension of your team, navigating clinical trial conversations and facilitating the complicated and time-consuming task of identifying and enrolling in a trial. This free service connects patients with highly trained nurse navigators who can explain more about what clinical trials are (and aren’t) and answer questions, allowing for more succinct conversations in follow-up doctor visits.
“It can be difficult for providers to stay on top of what clinical trials are happening—even in their own institution,” says Szumita. The CTSC can provide an individualized list that fits your patient’s needs. “Navigating the clinical trial process is very complex. It takes at least 22 interactions by a CTSC nurse navigator, on behalf of a patient, to achieve enrollment,” Szumita says. “The CTSC is there every step of the way for patients and their healthcare teams.”
Understand and address the barriers
Awareness of clinical trials is just one obstacle to participation. Patents need to be able to access them. “Access to a clinical trial may be a very complicated path for many patients, and there are so many bumps in that road,” says Szumita. “I always tell healthcare professionals to expect patients to have at least one barrier.”
The majority of Americans don’t live near large urban academic centers where most trials happen, and a patient may be unable or unwilling to travel. But even those living in cities can face long commutes on public transportation—a challenge for those who are immunocompromised or simply feeling unwell.
Cost is an issue too, no matter where the trial is located. Though treatment through a trial is usually covered by insurance, there will still be out-of-pocket expenses for deductibles, co-pays, travel, gas, parking, childcare costs and the like. The financial strain becomes even more challenging for those who are uninsured, or if a patient or caregiver faces lost wages when unable to work during treatment.
Blood Cancer United offers an array of free patient support including financial assistance to defray the cost of co-pays, nonmedical expenses like travel, lodging, and childcare, and urgent needs like rent, mortgage, and groceries. We also help families prevent and navigate medical debt. And our information specialists and clinical trial nurse navigators can identify additional resources. For example, large cancer centers often have navigators who can also help a trial participant with financial or logistical needs. “It often requires a patchwork quilt of resources, to get patients the care and support they need,” says Szumita.
Approach the decision as a partnership
Don’t let your own assumptions about a patient’s desire or ability to join a trial prevent you from bringing up the option. In the Cancer Clinical Trials Communication Skills training, Dr. Friedman tells the story of a patient who had stopped standard treatment when feeling better and wound up back in her office after relapsing. “We were talking about what second line treatment might look like. I was trying to get in the habit of talking about clinical trials, so I mentioned it as an option. And surprisingly, he wanted to learn more.”
When a trial becomes appropriate, involve the family in the discussion. “Caregivers can have a lot of influence over whether the patient considers and decides to go ahead with receiving treatment through a trial,” says Dr. Bylund. Phrases like “We need to make a decision together,” and “What are your thoughts at this point?” help everyone feel empowered in the decision making.
If you’ve been talking about clinical trials all along and sharing resources, you’ve already helped build a basic understanding of what they are and how they work. With your help and clear communication—and support from advocacy organizations like Blood Cancer United—patients and families will have a better understanding of whether a clinical trial is right for them.
Resources
For healthcare professionals:
- Cancer Clinical Trials Communication Skills training: To learn more about this training, contact Dr. Naomi Parker at [email protected]
- Clinical Trial Support Center (CTSC) 1-800-955-4572: Registered nurses with expertise in blood cancers personally assist patients, caregivers and their healthcare providers throughout each step of the clinical trial process.
- Booklets and fact sheets
- Podcasts
- Professional development and continuing education programs
- Videos and webinars
Share these resources with patients and families:
About the author
As Blood Cancer United’s Chief Medical Officer (CMO), Gwen Nichols, MD, plays a critical role in advancing cures through a unique combination of clinical, academic, and pharmaceutical experience. She oversees Blood Cancer United’s scientific research portfolio, patient services and policy and advocacy initiatives. A physician and scientific researcher, she has dedicated her career to advancing cures for cancers.
