About 18 months ago, PatientsLikeMe developed its OpenResearchExchange to connect researchers designing clinical trials with patients to get their feedback on health measures. Its latest pharmaceutical partner Actelion Pharmaceuticals wants to use the exchange to collect patient insights for a rare condition — a form of non-Hodgkins lymphoma that affects the skin, according to a company statement.
In a phone interview with MedCity News, Paul Wicks, the vice president of innovation at PatientsLikeMe, described Mycosis fungoides, the most common form of cutaneous T-cell lymphomas, as a combination of a skin condition and cancer. It produces tumors that resemble rashes and cause itching and may be painful– symptoms that may be embarrassing to patients and affect their quality of life. Through the partnership Actelelion will collect patient data on what would improve the quality of their lives and share it with other researchers so they can benefit from the feedback of this patient population.
“The risk is if we have poor measures for a disease that focus on objective measures rather than including measures that use patients perspective, we lose the ability to find value in those treatments,” Wicks said.
