By Maxine Bookbinder 

March 4, 2020 | The medical and pharma industries, not the patients, are the cause of low clinical trial participation, says one patient advocate. The remedy is available but requires these industries to forego rigid paradigms, to re-examine their thinking on patient participation, and to refocus their priorities.   

In a recent survey in Patient Power, a cancer patient support website, more than half of the respondents said they would participate in a trial if their medical care team had either mentioned it or not discouraged it.  

In the survey of 666 cancer patients and 50 caregivers, 43% of patients said that medical professionals never discussed clinical trials with them. A majority said they would participate in clinical trials if given the information and opportunity. Patients who had been in at least one trial described it as a positive experience and would join another one. 

“In the old days,” says Andrew Schorr, co-founder and president of Patient Power, “the attitude was, ‘I’m the doctor and you’re not.’ It was a parent-child relationship. Our mission is to turn that upside down. Now, the attitude is, ‘I’m the patient, you are one of my consultants, and I will make the decision that is best for me.’” 

Traditionally, clinical trials were discussions between pharmaceutical heads, scientists, and medical center practitioners. “Patients were fuel in the tank and not seen as participants in discussions. There was just the assumption there would be patients to test on,” says Schorr, a two-time leukemia survivor. 

Pharma and biotech companies obviously need patients to complete clinical trials and get drugs to markets, and patients want the opportunity to join these trials. Yet, the participation rate for clinical trials is only about eight percent. If the industry was more flexible and abandoned old-school standards, says Schorr, pharma could increase clinical trial recruitment rates faster and save money doing so. He says the fix is simple: education, transparency, collaboration, and respect.  

Too often, local medical practitioners don’t tell patients about trials, downplay their importance and benefits, don’t understand the trial process, think they are experimental risks, or don’t know which ones are available. Some doctors don’t want to lose paying customers while others assume that a patient could not participate due to finances or logistics. Schorr said his own physician told him that his (the doctor’s) treatment worked for others, so therefore he should try it, too. “I had to go the extra mile to find a trial.”  

The pharmaceutical industry spends nearly $10 billion a year on direct-to-consumer drug advertisements. Instead, says Schorr, those dollars should be redirected to educate the public about clinical trials.  

“It seems like there are four new psoriasis drugs ads out. People don’t remember their names. These ads are not effective.” Instead, these ads would be more powerful and cost-efficient if they told viewers to ask their doctors about clinical trials and research and whether there are any drugs available for their specific disease. Dollars could also be redirected to education and public awareness for clinical trials through different mediums, such as TV, Facebook, patient advocacy websites and patient groups, churches, and community clinics. 

“The question to ask is, how do I get treatment that’s right for me?” Says Schorr. “You need to lay all the cards on the table. The problem is that not all the cards are on the table. This card for this trial is 500 miles away but maybe there is babysitting or plane fare available. The public doesn’t know about this and it should.”  

Doctors could also help patients find trials regardless of location and not assume a trial is too inconvenient, too far, or too expensive. “That is up to the patient and family to decide,” says Schorr. Pharma could help here with financial assistance information. Whether it is an initial diagnosis or relapse, doctors should mention what drugs are being investigated and what new ones have been approved.  

“If you are diagnosed with something serious, you owe it to yourself to find out if there are researchers somewhere working on that.” But, says Schorr, there is no integrated data system in the US to do this, which would require collaboration between competing pharma companies. “Clinical Operations doesn’t talk to marketing, who doesn’t talk to R&D. Everyone should hear the patient’s voice.” He would also like to see more connections between big research centers and smaller outlying research clinical partners, where patients can receive therapy without traveling long distances and always be valued and respected as individuals. “Clinical trial doctors and investigators should treat patients the way investment firms treat their clients as investors: thank them for their service, share progress data, and tell them about successes.”  

Some Individuals and groups are filling in the gap. In 2011, the Cancer Research Department at the ChristianaCare’s Helen F. Graham Cancer Center and Research Institute in Delaware launched the Oncology Patient Advocate for Clinical Trials Committee (OPACT) to enhance awareness of and support for clinical trials and to educate patients and community members about what clinical trials are and the importance of clinical trial participation. A few of the many services OPACT offers includes providing community outreach, advising individuals who are considering joining a trial, giving presentations to students in grades 9-12, community colleges and universities, and honoring local individuals and physicians who participate in clinical trials. Kandie Dempsey, RN, OCN, director of Cancer Research at the Helen F. Graham Cancer Center & Research Institute, says that in 2019, the participation rate for clinical trials at the Graham Cancer Center was 30%, triple the national average.  

The Center for Information and Study on Clinical Research Participation (CISCRP), a first-of-its-kind nonprofit organization dedicated to educating the public, patients, medical/research communities, and policy makers about clinical research, helps patients find clinical trials. 

Computer-savvy patients are using the Internet to find clinical trials; most of Schorr’s survey respondents found their trials on Patient Power. For-profit companies such as Anti-dote and TrialJectory help patients search clinical trials and Trial Scout posts participant comments and ratings on clinical trial experiences (Trial Scout just won the 2020 Participant Engagement Award at SCOPE). Transcelerate BioPharma works with pharma, healthcare providers, patients, and clinical trial investigators and sponsors to standardize procedures to improve the clinical trial research and process.  

But not everyone has Internet access, a computer, or research capability. “We need to think about how we can build bridges between major research centers and community clinics for the betterment of patients,” says Schorr. Patients, especially those with newly-diagnosed serious illnesses, need help to connect to the right team, find all their options, and be respected throughout the process. 

Schorr hopes to repeat the survey in the future to a more diversified and wider audience. His dream is to present programs globally on Patient Power in multiple languages on cancer and other serious and chronic illnesses. “Isn’t it a shame if a patient suffers simply because all their options, including ones in research, were not presented to them. We can fix that if we work together in new ways. Patients are waiting.”