A Conversation about Health 2.0 and community empowerment with the founders of Inspire.com

I had the opportunity to meet Brian Loew and Amir Lewkowicz, CEO and Vice President of Parnterships, respectively, for Inspire.com.

The company was created 3 years ago with this mission:

We believe no one should have to go it alone, we all need a safe place to talk, and we can help one another.”

Inspire is based here on the East Coast, which is good (Health 2.0 is happening all over the U.S.), and differentiates itself by not accepting advertising, and visibly partnering with nationally known health support organizations. As Brian and Amir explained to me, part of the drive was to improve access to clinical trials, which is handled in a privacy-appropropriate, opt-in, way.

I gave the analogy in our conversation of the patient that leaves an exam room in a medical center, not realizing that the patient going in after or before them might have similar experiences that they would want to share. Communities like this can fill that gap by bridging patient to patient and patient to community organizations like the partners on the Inspire site.

I think there’s a role for communities like this to partner with the greater health ecosystem, not just in the acute phase of a serious illness, but maybe in the acute phase of a manageable illness, like hypertension. Do readers agree? And do they know of Web2/Health2 communities for diagnoses like this?

6 Replies to “A Conversation about Health 2.0 and community empowerment with the founders of Inspire.com”

  1. What's great about Inspire is that through partnering with non-profits (such as NORD), these non-profits have a place to send patients and caregivers to find other like them in a trusted and safe environment that is sanctioned by said non-profits. That is not to say that other sites are not trusted and safe.

    For example Wilson's Disease – you might not find anyone with WD on any other social health networking sites (hypothetical), but anyone who is touched by WD has gone to the WDA for answers and is lead to Inspire. This is what really differentiates them from other social health networking sites, and the fact that their business model is not ad generated.

    I just joined TuDiabetes, but I am not sure if they are affiliated with the ADA. It is a micro social health network for patients with, you guessed it, diabetes and pre-diabetes.

    I'm too Young For This! Cancer Foundation has social networking aspects and a ton of links for young cancer patients and survivors.

    That's all I got off the top of my noggin. With NING though, anyone can create a social network for anything. I created one for my 14 month old son and his fans.

    I'm sure social health networks are going to grow and also get more segmented – ie. Patients Like Me is adding more disease states, and on the converse more micro networks (estudiabetes.com for spanish language diabetics) – also with co-morbidity, I want to communicate with patients who have high cholesterol as well as caregivers who have a grandmother with Alzheimer's (example).

    There is a need for them in healthcare to connect with patients, and caregivers to find out what works from the patients' perspective (treatments). Also because of the anonymity online, a patient might share more with an online buddy than their partner, family or friends.

    I often post answers when I have them to questions on a handful of such sites, in the hopes that it helps!

  2. Inspire is unfortunately one of the least interesting sites amongst the health social networks. it is relatively inactive and most of the group do not have many members who are active.

    i agree that working with not-for-profit is interesting but the company itself is pure for profit.

    if you do want to take a look at active and thriving social networks for health i suggest you go to http://www.dailystrength.org or http://www.mdjunction.com these two social networks do look like their heading the right way.

    let's hope we all do not need them, but its good to know they're here if we do 😉

  3. Hello Health Social Networks,

    Thanks for your comment and the blog – I am glad that someone is covering health social networks. As you point out with regard to Inspire, the model for success is a challenging one.

    It says that you used to work for a health social network. What are your insights about how to make these grow and thrive? How could the health system partner with them?

    I went to MDJunction's Blood Pressure support group – and glad to know that there is one for blood pressure. It has only 10 members, and I would say leans heavily on the commercial side. This might cause anxiety for some health professionals, but it doesn't for me. I'm focused on the need that these sites fulfill among patients who haven't had their needs met by the health system.

    I also followed the links through to this article at HealthCentral on blood pressure medications, and, well, the information is accuracy-challenged. However, I think the thing is not to bash sites and more to figure out how to take the demand that these sites are meeting and use them to help people stay healthy, because the sites wouldn't exist unless there was a demand for something…

    So I'm glad you are covering the health social network space, and I would be interested in thoughts of how to partner with the energy that's creating these, and foster them to promote lifelong health. Any thoughts?

    Ted

  4. Hi Ted – I am very sorry if that came out like i was out bashing Inspire, i don't know anyone in that company and i appreciate anyone who's venture involves helping people. i was just saying my view of how Inspire looks, i've been at the site lots of times.

    as for MDJunction and HealthCentral… i think that if you look deeper you'll find content even worst than what you found in that group, i am probably the last person on earth who is going to defend content written in all these networks in general. i was just sharing point of view and what i think are the active networks in this niche. there is a longer list i keep you can take a look at. as i do not work for any of them anymore and (unfortunately) i don't hold stocks in them either i am just looking and saying what i think.

    Your question is the reason i still keep busy and updated with that niche, i think the future holds many possibilities in regards to the health system partnering with these sites.

    the options are many: PHR, second opinion, geographic researches for the origin of current diseases, different treatment approaches worldwide, deeper diagnosis of current disorders using the mass approach, shifting of disorders and anything else that comes up just from having a room with thousands of people who share similar symptoms and are eager to find relief.

    again – i would like to apologize for the Inspire comment i wish them all the best and success 😉

    Sam

  5. Hi Sam,

    I am glad you joined the conversation! Myself and others want to learn about how to leverage social networks.

    If you looked at the stuff I'm doing with California Healthcare Foundation around high blood pressure, what input would you have for us?

    What's your backround in this space. And I did subscribe to your feed,

    Ted

  6. Hello,

    Thank you, Alex, for your compliments.

    Sam, you make an excellent point, and we redesigned our home page to address what you describe. Of the 150 groups in Inspire, 50 of them have health association partners. The lion's share of activity occurs in these 50 groups. As we add partners to the remaining 100 groups, we'll see activity there too. But as you point out, if you land in one of those other groups right now, there may not be a great deal of activity yet.

    Before we redesigned the home page, it was not straightforward for you to find the most active groups if you weren't visiting directly from a health association partner web site.

    What we did to address this was to add site-wide search right on our home page. So if you go to http://www.inspire.com and search for nearly anything, you'll find a ton of member-generated content; there are now over 50 million words in Inspire written by members(!), and overall site activity is quite high. Quality is high as well, which we have found is one of the meaningful benefits of our health association partnerships.

    One final note: an increasing number of visits to Inspire — now several thousand per day — are coming from search engines. If you google phrases like 'lung cancer survivors' you'll find high-ranking results that deep-link into Inspire. We're not buying any search words; these are all organic results.

    Please keep the comments coming. I appreciate your insight, and we strive for continuous improvement.

    Thank you,

    Brian

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