June 13, 2007, 8:58 am
In a Switch, Online Patient Groups Inform Researchers
Posted by Jacob Goldstein
For years, online patient groups have brought news of the latest research to patients. Now information is starting to flow in the other direction, as online groups help recruit patients for new research on a range of diseases, Laura Landro writes in this morning’s WSJ.
Harvard researchers studying the genetics of patients with rare blood cancers recently reached out to Joyce Niblack, who runs an online mailing list for patients with the diseases. She put the word out, and more than 300 people on her list sent in mouth swabs and bone marrow samples. For a Mayo Clinic study on quality of life in patients with the diseases, Niblack recruited more than 1,000 participants from 30 countries. Researchers from Mayo now run the clinical trials page on the web site of Niblack’s foundation.
In another instance, a Web site for patients with a rare cancer called leiomyosarcoma rallied patients to send more than 300 tissue samples to Stanford researchers assembling a tissue bank to study genetic and molecular patterns associated with the disease.
A few possible pitfalls accompany the new trend. If for-profit Web sites were to recruit patients for industry-sponsored clinical trials, Landro suggests, patients could be persuaded to sign up for experiments without first consulting a doctor about the pros and cons. And some researchers are tapping online communities to conduct patient surveys that may ultimately prove to be of limited scientific value.
“The challenge is keeping the patient voice in,” one researcher tells Landro, “but also staying as rigorous as possible and not being swayed by inaccurate, premature or misleading data.”
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