Data Mining Poses Privacy RisksOnline Health Communities Can Be Vulnerable
One such social media website, PatientsLikeMe, updated its participants this week about a data mining incident that it originally revealed in the spring. Turns out that a computer program for Nielsen Co., a media research firm, was scraping -- or reading and storing -- information from a forum on the site.
In an earlier blog on the web scraping incident, Ben Heywood, president and co-founder of the website, claimed that the web scraping incident was a violation of the site's user agreement but was not a security breach. "Your account information was not in danger of being stolen," Heywood said. He speculated that Nielsen, had it not ceased the activity, likely would have sold the information as part of its Internet monitoring product - much like PatientsLikeMe, itself, does.
It's time to educate your patients and staff alike about the risks involved in online health communities and other social media.
PatientsLikeMe informs participants when they sign up that it makes money by selling de-identified, aggregated data to companies that are developing or selling products, such as drugs or devices, to patients. Heywood says the site keeps private the full names and e-mail addresses of participants, which are stored separately in their account information.
Here's the bottom line: It's time to educate your patients and staff alike about the risks involved in online health communities and other social media.
Make sure your patients read the fine print before they sign up for a website that enables them to share information with others who have similar conditions. The sites can offer very beneficial support and useful information. But they have risks, especially when users clearly identify themselves in their posts.
And as I pointed out in an earlier blog about social media, educating staff about keeping protected health information off Facebook, Twitter and similar sites should be a high priority, much like education about sexual harassment, discrimination or any other behavior with zero tolerance.
But be sure to educate your patients as well about the risks of discussing their health conditions in the wide-open forums of 21st century online media.