Authored by Lindsey Elliott, Marketing & Communications Manager and Joan Chambers, Senior Director of Marketing & Outreach
Understanding the patient journey in clinical research is critical for increasing participation and diversity in clinical trials. A survey on patient perspectives on clinical trial participation was conducted by Rare Patient Voice and Informa Pharma Intelligence. Panelists discussed the findings in a February 2022 webinar, which can be accessed here.
Co-moderator Mike Wenger, Global Head of Patient Engagement at Informa Pharma Intelligence, is a software developer with over a decade of experience in clinical trials. He is also a patient, having been diagnosed with a brain tumor when he was in his 20s. “I had a very fortunate prognosis, but it is something that has opened my eyes to the importance of clinical research and moving science forward,” says Mike.
Co-moderator Wes Michael is a longtime market researcher who founded Rare Patient Voice and serves as President. “I wanted to help patients take part in surveys as well as clinical trials,” says Wes. “This survey let patients share their experiences, as well as their desires when it comes to clinical research.”
Respondents who had taken part in a clinical study presented a variety of perspectives in the survey. About half of those who took part in clinical trials were told about them by their doctors, while the other half learned about them from patient advocacy groups.
Panelist Steve Jones, President of EU-IPFF (The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation), a pulmonary fibrosis patient and patient advocate, says, “The main source of information is undoubtedly physicians.” However, widespread education in the medical community is needed to assist in increasing participation in clinical trials. The process of finding a trial must be simplified.”
When it comes to physicians sharing information about clinical trials, panelist Ashley Smock, a woman living with ovarian cancer, says, “I think it comes down to patient-physician relationships. Had my own physician brought up a clinical trial as an option, I probably would have been more interested.” When Ashley sought a second opinion about her cancer diagnosis, that doctor mentioned clinical trials as an option. Ashley was less open to the information the physician shared, explaining, “He didn’t have the best bedside manner. I did not feel valued as a patient during our conversation, so I didn’t follow up. There was no relationship and there wasn’t a lot about the visit that was positive.”
There is a need to raise awareness of clinical trials, the value of participation, and provide an easier way to access clinical trials, as mentioned in the webinar discussion. Steve is part of a collaborative effort where he lives in the United Kingdom to develop a European clinical research database that is easier to use than clinicaltrials.gov. “The website [clinicaltrials.gov] is almost impossible to use for ordinary people,” says Steve. “Information needs to be made simple to understand and in plain language wherever possible, to make it easier for patients to access.” Steve cited CISCRP’s Search Clinical Trials database as a streamlined option to review.
“There have been many recent initiatives to improve the patient experience with clinicaltrials.gov,” says Mike, and despite complexities, “…it is still an important entry point for patients to learn about clinical trials.”
Other initiatives to help with the clinical trial participant’s experience include the use of technology that offers flexibility and convenience. “I’m a big proponent of decentralized clinical trials, when they’re possible,” says Wes.
The majority of clinical trial participants questioned (80%) said their recruitment process was “great or good.” Within a week of starting the process, two-thirds said they were enrolled in a clinical trial. Participants value communications when they are adequately explained throughout the life cycle of the clinical trial and when they are timely and relevant at each stage of the process. Conversations with the physician investigator and clinical research site staff can take place via phone calls, emails, text messages, telehealth appointments, and in-person visits.
Patients also want to know the results of clinical trials. Sixty-four percent of those who had participated in clinical trials said it was important to hear results, while 88% of those who had not participated in a clinical trial said it was important. “Simple charts and summaries of the salient points of the trial would be very helpful going in, to know that at the end of the day, I will have that information and be able to access the results,” says panelist Sarah Nechama Frisch, who lives with narcolepsy and cataplexy. “Email is probably the most practical way to disseminate information for most people.”
“The more everyone in the United States is exposed to clinical trials, particularly with what is in the headlines currently about what clinical research is, why we do it, and how it’s run, that awareness will go a long way,” notes Mike.
“As patients, we want medications to be effective, approved, and on the market, because our population has a lot of living to do and we want to be part of the development of things that are going to keep us here for a long time,” says Ashley. She advises biopharma companies conducting clinical trials to “ask us for our feedback about clinical research, because we want this to move forward.”
You can learn more by accessing the webinar recording here.
View additional companion content:
To search for medical conditions in a specific location, visit our Search Clinical Trials page.
To stay informed about clinical studies, visit our Resources page.
About Informa Pharma Intelligence
Informa Pharma Intelligence powers a full suite of analysis products—Datamonitor Healthcare™, Sitetrove™, Trialtrove™, Pharmaprojects™, Medtrack™, Biomedtracker™, Scrip™, Pink Sheet™, and In Vivo™—to deliver the data needed by the pharmaceutical and biomedical industry to make decisions and create real-world opportunities for growth. For more information visit pharmaintelligence.informa.com.
About Rare Patient Voice
Rare Patient Voice, LLC provides patients and caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials. The RPV panel has over 100,000 patients and caregivers across more than 700 diseases, both rare and non-rare, in the United States, Canada, the United Kingdom, Germany, France, Italy, Spain, Australia, and New Zealand. Visit us at www.rarepatientvoice.com.
