Published May 12, 2014

Baltimore, MD, USA - Many people are reluctant to participate in clinical trials.  This reluctance stems from the perception of risk while not seeing any clear benefit to participation.  The exception is when an individual has a condition for which there is no effective treatment, and in this instance, the patient may have no other options. Researchers at the University of Maryland School of Pharmacy and PatientsLikeMe, a patient network where people can share and learn from real-world, outcome-based health data, believe that patients would be more willing to participate in research if trials were designed to be more patient-centered. Paul Wicks, PhD, Vice President of Innovation at PatientsLikeMe and a research neuropsychologist, fully understands the frustration patients face when clinical trials fail to live up to their expectations.  "Randomized controlled trials have traditionally been designed with the science in mind. But as patients become increasingly empowered through digital information, and engaged in managing their own condition, the traditional trial models need to evolve, too. We propose three potential upgrades that give patients a higher chance of maximizing their outcomes, avoiding harms, and integrating trials into everyday practice so that research becomes a part of care." C. Daniel Mullins, PhD, Professor at the University of Maryland School of Pharmacy, principal investigator of an AHRQ PCOR Research Infrastructure Development Grant, and lead author of the study, is familiar with the benefits the patient’s voice brings to the research process. “Many people think that comparative effectiveness research (CER) is only about observational studies, yet CER can and should include prospective trials as well.  In order for CER studies to be meaningful to patients, trials and other CER studies need to be patient-centered.” The full article, “Patient-Centeredness in the Design of Clinical Trials” is published in Value in Health.

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