The use of social media and online networking promises to be important both in clinical trial recruitment and in clinical discovery. Down the line, it might even prove valuable in comparative effectiveness research.
A new Mayo Clinic study shows that social media can help researchers find patients with rare diseases who are candidates for clinical trials more quickly than conventional methods of recruitment.
Using patient-run websites dedicated to heart conditions and women's heart health, a team of cardiologists led by Sharonne Hayes, MD, is reaching out to survivors of spontaneous coronary artery dissection (SCAD), a condition that affects only a few thousand people a year, but can be fatal if it leads to a heart attack.
With the help of a SCAD survivor, the Mayo team initially went to the online community on WomenHeart: The National Coalition for Women With Heart Disease. Within a week, the study attracted 18 volunteers, six more than the maximum number sought. The rest will participate in a new, larger SCAD trial.
In another innovative use of social media, PatientsLikeMe, a health data sharing site with 100,000 members, helped evaluate a treatment for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Just as a study appeared touting the supposed benefits of lithium for treating ALS, 348 people who were taking lithium for the disease began recording their experiences with the drug. Nine months later, PatientsLikeMe concluded that it was not having much effect on their ALS and published the results in the journal Nature Biotechnology.
This was not conclusive evidence, even with the matched control group that the researchers used. Still, the information was easy to gather and available in real time.
To learn more:
- read the Mayo Clinic press release
- see the Healthcare IT News story on the ALS study
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