Uncertainties about Clinical Trials Keep Patients from Enrolling

A young female doctor in a white coat sits with an older male patient in an exam room

Medical oncologist Margaret Callahan is leading clinical trials at MSK that are studying immunotherapy treatments, which use the body's own immune system to attack cancer.

Nearly every cancer treatment available today exists because of a clinical trial. At Memorial Sloan Kettering, more than 900 cancer clinical trials are currently under way. Most people are aware of how necessary these research studies are and how they can lead to lifesaving breakthroughs — but are nevertheless unlikely to participate in them. In fact, studies have shown that only 4 percent of all patients enroll in clinical trials for cancer each year.

According to a comprehensive survey of more than 2,000 Americans, including nearly 600 doctors, conducted on behalf of MSK, just 40% said they have a positive overall impression of clinical trials, and only 35% said that they were likely to enroll in one.

Only 35% of Americans said in a survey that they were likely to enroll in a clinical trial.

These are sobering statistics given that the vast majority of advances in cancer research and treatment come as a result of clinical trials. In order to keep making progress toward ending the disease, these studies must continue — and patients must enroll.

“When it comes to advancing cancer care, clinical research is the rocket fuel for better treatments, more accurate diagnoses, and, ultimately, cures,” says MSK Physician-in-Chief José Baselga. “If this trend of low enrollment continues, we will face a crisis in cancer research and discovery. Further education is the key to participation and progress.”

The upside is that once the respondents in MSK’s survey were given more information about how clinical trials for cancer work, almost half said they would enroll. The challenge for healthcare professionals is to bust the myths and misconceptions surrounding cancer clinical trials and educate patients about how beneficial they can be — both for themselves and for future patients.

Lack of Knowledge Drives Low Enrollment 

Overall Favorable Impressions on Trials

Study participants cited a range of concerns as barriers to participation in clinical trials, with worry about side effects (55%) and uncertainty about insurance and out of pocket costs (50%) topping the list. They also noted inconvenience of trial locations (48%), concerns about getting a placebo (46%), skepticism of the treatment (35%), and worries over feeling like a “guinea pig” (34%) as being potential reasons they wouldn’t participate in a trial. 

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Misconceptions Exist for Doctors Too

Adding to the challenge of low enrollment is that healthcare professionals themselves often fail to discuss clinical trials with patients early enough in their treatment or to explain clearly them about what participation in a trial entails.

While clinical trials are often available to patients who are in the beginning phase of their treatment, many physicians view them as a last-ditch effort for patients who have no further options; 28% of physicians surveyed said they consider clinical trials as “a treatment of last resort.”

“Failing to consider clinical trials at every stage of cancer diagnosis and treatment can represent a missed opportunity, primarily for patients, as well as for doctors and researchers trying to develop better therapies,” says Paul Sabbatini, Deputy Physician-in-Chief for Clinical Research at MSK. “It’s critical that we spread the word that there are options to consider early on.”

Clinical trials offer our best thinking toward finding better ways to prevent, treat, and cure cancer.
Paul Sabbatini Deputy Physician-in-Chief for Clinical Research
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Education Can Increase Participation in Cancer Clinical Trials

Changing attitudes and increasing enrollment in cancer clinical trials primarily requires education, for patients and doctors alike.

“I really did not have any awareness of clinical trials at all,” says Jennifer Carrieri, who participated in a cancer clinical trial for multiple myeloma as a patient of MSK medical oncologist Pamela Drullinsky. Once she received information about the trial and felt comfortable that she knew what was involved, Jennifer says, “I was very comfortable enrolling… There was nothing to be afraid of.”

“Clinical trials offer our best thinking toward finding better ways to prevent, treat, and cure cancer,” says Dr. Sabbatini. “By encouraging patients to participate and educating healthcare professionals and patients alike, we can ensure that these critical research studies continue to move cancer treatment forward.”

Find a Clinical Trial
Search our database of clinical trials at Memorial Sloan Kettering Cancer Center that are currently enrolling new participants.
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Commenting is disabled for this blog post.

My husband took part in a chemo clinical trial in 2000-2001 after surgery for stage 3 colon cancer. I have often wondered why no one has ever contacted us for follow up. Putting a patient in a trial it is to gain knowledge about the drugs used. Without follow up that information is lost.

Kathy, we’re sorry if you and your husband didn’t get the information you wanted. After a clinical trial ends, the data for all participants are reviewed, analyzed, and published in a medical or scientific journal. Results are also posted after a period of time on clinicaltrials.gov, a service of the National Institutes of Health. Everyone has access to the study’s findings either on the website or in the manuscripts. We recommend you reach out to your husband’s doctor or the PI of the clinical trial to find out if the study was published. Thank you for your comment.

Inclusion criteria for every clinical trial I looked at for my friends' son cancer, had a failure to conventional chemo treatment. He was never referred to a clinical trial, no matter how many times my friend solicited the physician's suggestion. And it was the largest children's hospital in San Diego. Unless the hospital or a clinician participates in clinical trials themselves, it is very difficult to get a referral. Another problem is logistics: relevant clinical trials may be conducted far away from home and the burden of paying for accommodations, etc., may be prohibitive for the families. The support system for the families and patients for multiple visits and possible long stays needs to be there.

This is an understandable but frustrating aspect of clinical trials.

A good follow-up to this would be to answer some of those common questions.
I recently saw a video with Dr. Postow speaking about the benefits of participating in clinical trials. Of particular note was his explanation of why participating in a trial can make sense as a first line of treatment rather than a last.
Thank you for your work.

Regarding Kathy's question and MSK's comment on follow-up after a trial. Kathy brings up a very good point. There is no follow-up. A patient and their family would not know when the results will be published nor will they think of even to look at Clinicaltrials.gov. When they complete the trial doesn't mean that the study has completed. I work at research institute in San Diego and our goal is to be patient centered in how we design our trials. We let them know about their results midway and when THEY COMPLETE the study. As healthcare professionals we cannot assume that patients know how to navigate around the complexities of clinical trials.

Publication bias is a significant problem with approximately 20% of clinical studies never being published. It is my opinion that Sponsor companies have an ethical obligation to publish results, even if they are negative. Until this bias is addressed, how can we truly have evidence based medicine? This issue needs to be addressed on a legislative level so patients can be assured that their participation in clinical studies is truly advancing oncology treatments.

I was diagnosed in June 2015 with Stage 4 renal cell carcinoma. The prognosis for this condition using the standard treatment isn't great: 50% mortality within 3 years and 92% within 5 years. I came to MSKCC specifically seeking to get into a clinical trial and, fortunately, I was selected for an immunotherapy trial. Now, a year (and one less kidney) later, my tumors have shrunk by over 80% and my outlook is very positive. But even if it hadn't worked so well, I wouldn't have regretted choosing to join the trial.

Tom, we’re glad to hear you’re doing well. Thank you for your comment.