Patients with Rare Diseases Jump-Start Research thru Social Media
Patients with “Orphan Diseases” Find Each Other Using Social Media Online & Jump Start Research
People who have “orphan diseases” (extremely rare diseases) often find that their local MD’s know very little about their disease because they may have never encountered it in their practice.
Some patients are taking matters into their own hands and finding each other online through social media to exchange information, experiences, and even spur researchers to do clinical trials.
Here’s one such success story about a young woman with a rare disease who found 70 other patients with her disease from around the world and inspired an MD (Dr. Sharonne Hayes) at Mayo Clinic to undertake new clinical trials.
Listen to the story here on NPR Morning Edition: Patients Find Each Other Online to Jump-Start Medical Research.
Some quotes from the story:
“Hayes set up a virtual patient registry and allowed patients from all over the world submit their medical records and scans online. In the first trial, Mayo enrolled 12 patients — and had to turn people away.
…The rise of social media has allowed patients to do for themselves what researchers like Hayes can’t: spread information about research. Through their personal Facebook pages, chat rooms and message boards, patients are recruiting each other in a kind of virtual word-of-mouth.
“This is not investigator-initiated research, this is patient-initiated research,” Hayes says, “and to a certain extent has been patient-sustained research in the case of our study.”
What Do Seniors Do Online
WHAT DO SENIORS DO ONLINE? VISIT FACEBOOK AND YOUTUBE, OF COURSE. Ben Parr. Mashable, the Social Media Guide.
http://bit.ly/8WQk6S (downloaded Dec. 21, 2009, Nancy Rhine)
We’ve known for a while that Facebook users are getting a lot older, but now new data released by Nielsen reveals that the number of seniors (65 and older) using the Web has increased by 6 million in the last five years. Not only that, but nearly half of online seniors visited Facebook or YouTube last month, making them their third and fourth most visited online destinations.
The research confirmed a trend that we’ve seen in recent years: That more seniors are becoming active on the Web. In November of 2004, there were 11.3 million active seniors online. In November 2009, that number jumped by 55 percent to 17.5 million. In addition, they spend more time on the Web, totaling an average of 58 hours a month in front of the browser.
While those numbers didn’t surprise us, we were interested in data that Nielsen collected on their browsing habits. Take a look at these two tables. The first reveals the most common activities among active online seniors. The second shows the top ten Web sites and online destinations that this demographic visited last month:
A majority of online seniors check their e-mail, print maps, play around with photos and check the weather. All of these tasks seem utility-based, but then again, we expect that these numbers would be similar in almost any other demographic. Come on — who here hasn’t checked their e-mail, mapped something out or paid their bills online in the last 30 days?
The more interesting data comes from the top 10 online destinations table. While Google Search was an obvious winner, Windows Media Player is a bit of a surprise until you realize just how many Web sites embed the thing. However, the rise of Facebook to number three on this list, when a year ago it was the number 45 most visited Web site by seniors, is a huge sign of just how mainstream social networking has become. YouTube at number four is another confirmation of this trend.
This is just what happens when new technologies become more accessible and more mainstream. Let us know what you think of these trends in the comments.