Website Review: Trusera

I read just last week that an interesting new social network was officially launched, Trusera It's an online health network where people can share their real-life experiences. The network's tag line is "the power of been there." The idea is you can find great, practical health advice from other people.

The founder of Trusera, Keith Schorsch, is a former Amazon executive. Just as I came upon the idea of WELLalarm through my experience with illness, Schorsch thought of Trusera while dealing with Lyme disease. Actually, he became ill on a trip to the Northeast and none of the doctors he saw in Seattle could figure out what was wrong. It wasn't until he told a friend about his symptoms that he hit upon his diagnosis. "Sounds like Lyme disease," his friend said. Sure enough, his friend was right. The doctors didn't catch it because Lyme disease is rare in Seattle.

Schorsch realized how valuable it is to have a network of people sharing information about health matters. I get that, too. That is why I find the Neuropathy Association to be an important resources, and it's why I applaud their efforts to increase the sharing of information by patients and caregivers via their website.

One thing I find both particularly interesting and slightly disconcerting, though, is the the way Trusera links you to other users through keywords that you input. To further explain, based on the information you provide (and you only have to provide as much information as you're comfortable sharing), the networks software links you with other people through keywords, rather than just by your condition. Therefore, you don't get defined by your illness, but by rather your keywords. While on the surface is this seems like a fabulous idea -- I mean, we're all much more than our current physical condition, right? -- there are some potential concerns.

For example, people may jump to conclusions about other people's conditions (or their own) based on their keywords (and many users' keywords will most likely be based on symptoms). This may also lead to patients self-diagnosising conditions, a concern of many doctors already have due to the increasing use of the Internet for healthcare information!

Privacy is, of course, another concern. Though Trusera has taken precautions to help users protect thier privacy (specifically, you can control your privacy and share your profile with just a small network of Trusera members or the whole community) buy using keywords instead of conditions people may accidently share more information than they are comforatble doing without realizing it.

The network has been in Beta for a while and has built up membership, but it will become a stronger tool the more people join. Just having browsed the website, it looks very user-friendly, even for non-techie types, and the design is warm and attractive.

On the other hand, you have to request a membership in order to participate. I was a bit taken a back that this request must include a statement "about a health or wellness passion, interest, or experience." This could be a bit daunting for the privacy-conscious person who may just want to take a look around before deciding to participate.

You can read more about Trusera in Mashable, The Healthcare Blog, Venturebeat, and on Trusera's own blog.

Comments

[Jude O'Reilley]

Hey Stephanie! From the team over here at Trusera, thanks so much for your thoughtful review. You raise a bunch of very good points, many of which are continually on our minds over here. A couple of quick thoughts:

1. I really take your point about keywords. We're trying to connect people together based upon their shared experience, so we use keywords to make that shared experience easier to find. It could become a way to pigeonhole people or label them. You do have the option to keep your keywords private. It's worth noting, though, that your keywords are broader than just health conditions. People are sharing anything they'd like other people to know about them, i.e. yoga, Seattle, parent, etc, etc.

2. Users are not required to use their real names...and we encourage people not to. We're keenly aware that many people don't mind sharing their real name, but, like you, we are concerned about too much personally-identifiable disclosure.

3. However, there's no "anonymous" content on the site. We encourage people to create an online identity and to share freely within that identity. In this way, we're hoping to get the best of both worlds: authentic sharing of personal experience without the flame wars and general disrespect that can emerge in anonymous online communities.

More broadly, you raise the issue of "self-diagnosis" in your note. It's important to note (as we do on the site) that we're not a medical advice site. We're not trying to take the place of doctor's advice.

Our philosophy is that there's a lot we can learn from other people like us. I know that this can be a controversial point. Our take is that the more authentic, first hand sharing of personal experience that's available--rated by the community--the more engaged each of us will be in getting and staying well. We're giving people a place to surface their own experience and then helping health searchers judge for themselves--with the additional input of the community--what works for them.

Again, thanks for checking us out, and I'd love any other thoughts you or your readers might have about making Trusera even better.

Jude
http://www.trusera.com/health/users/heyjudeseattle

[Stephanie]

Thanks for the clarification, Jude! I like your point about how sharing experiences helps people stay engaged in getting/staying well.

[Emily]

This is a great site. Trusera has recognised of the importance of experience enhancing the authority of expertise. Health care consumers like to be able to consult those that have experienced the condition and the treatment, and the Internet has made this possible.