Patients Should be More Involved in Designing Clinical Trials, Survey Reveals

Patients Should be More Involved in Designing Clinical Trials, Survey Reveals
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 add
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  1. Don says:

    Totally agree. We need more research and correspondingly more trials. I would love to have the opportunity to be involved in something that may not only help me, but those after me so they don’t need to suffer as much as I have.

  2. Denise Bault says:

    Amen! I know a lot of us would like to have input into clinical trials. Unfortunately, most of us are too sick and tired to commit to the time and travel they take. I’m happy to see they are going to ask the patients for their input!

  3. Julie Parsons says:

    I agree to all the previous statements. We do need to participate in studies but some cannot even get out of bed let alone travel
    Why can’t we have the studies through our doctors? It makes sense to try this way for better results.

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