Participation in clinical trials is often burdensome for patients, yet many are prepared to help in improving trial designs to make participation more attractive, according to a recent report by the patient-powered research network PatientsLikeMe.

Patients also are seldom offered participation, but when they are, previous research discussions with a physician strongly impact the likelihood that a patient will enroll.

Based on these findings, network representatives urge researchers to allow patients in on the process of trial design to overcome barriers to recruitment and retention of patients in trials. In this way, both time and costs of new drug development can be reduced, they argue.

The study, “Clinical trials from the patient perspective: survey in an online patient community,” was published in the journal BMC Health Services Research.

Earlier studies have found that many clinical trials have difficulties enrolling enough patients. Study protocols have become increasingly complex, requiring a significant effort by patients. Meanwhile, studies show that misconceptions about clinical trial participation are frequent.

To better understand the factors that are linked to trial participation, as well as those preventing people from attending, researchers at PatientsLikeMe conducted a survey among network participants with fibromyalgia and other diseases.

Of 6,819 contacted patients, 1,621 completed the survey. Fibromyalgia was the third most commonly represented condition, making up 15% of the group. In addition, patients with multiple sclerosis, Parkinson’s disease, amyotrophic lateral sclerosis (ALS), rheumatoid arthritis, epilepsy, major depressive disorder, and systemic lupus erythematosus also contributed.

Patients were on average 55 years old, 67% were women, and 93% were white. Patients were mainly from the U.S., making up 72% of the group. Other English-speaking countries — the U.K., Canada, and Australia — also contributed to a significant degree.

Only 39% of the patients had ever discussed medical research with their doctor, and 31% had been invited to a clinical trial. The actual participation number was even lower, with 21% reporting they had ever enrolled in a trial.

Examining how likely patients with different conditions were to participate, fibromyalgia patients were least likely, with only 11% ever enrolling in a trial. The highest proportion of participation was seen among patients with ALS and Parkinson’s disease, of which 36% in each group had trial experienced.

Eleven percent of those who had been invited to participate had declined. The most commonly cited reason for not participating was the inconvenience of travel, which was cited by 42%. Concerns about side effects also were relatively common, stated as the reason for non-participation by 30%. In contrast, the possibility of receiving placebo only put off 23% of those who declined participation.

The factor that was most strongly linked to participation was if a patient had discussed medical research with a physician. Such patients were 11 times more likely to participate than those who had never discussed research — demonstrating the impact a treating physician may have.

Other factors linked to participation were being male, white, and living in the U.S. This observation demonstrates that researchers may need to put additional efforts into targeting underrepresented groups.

Of those who did participate, 58% stated that they were “extremely” or “very satisfied” with their participation. Another 20% were only “slightly” or “not at all” satisfied. A tool used to calculate a satisfaction score classified 46% of those who had participated as “promoters” of clinical trials, and 34% as “detractors” — some of which would actively advise against trial participation.

Among those who withdrew from a trial before it was completed, women were overrepresented.

When examining attitudes, the majority expressed positive opinions toward the possibility to participate; 88% were interested in learning more, and 80% stated that they would like to participate in a trial in the coming year.

Most importantly, however, was that 93% said they would be “Interested in helping researchers to design better trials.”

Factors that drove the will to participate were mainly the opportunity to improve one’s own and others’ health, as stated by 98% of the participants. A good reputation of the trial institution also contributed, as did the possibility to get medical bills covered in case of a trial-related injury.

In contrast, remuneration for participation was among the least important considerations.

While patient-related factors are only one aspect contributing to successful clinical trials, the researchers believe there are numerous valid reasons — including ethical, scientific, and business wise — for tuning into the wishes of patients in trial design.

“Researchers should let patients help design better trials to overcome recruitment and retention issues and hasten the development of new medicines.” the team concluded.