Vibrant patient communities are the holy grail of health educators and marketers alike. While some organizations choose to throw up a Facebook group, others have decided to create their own destination site. One of the most successful of these is Juvenation.org, the result of a collaboration between JDRF and Novo Nordisk. I recently caught up with the JDRF’s, Rachael Lewinson…

Kevin Kruse:  Tell me about the Juvenile Diabetes Research Foundation (JDRF) and about Juvenation.org.

Rachael Lewinson: At JDRF our mission is to find a cure for Type 1 diabetes through research.  So traditionally all of our activities have had a very strong research focus, and in more recent years-although research is still our core mission-we’ve started to focus more on outreach, particularly to adults with type 1.

About two years ago we came up with this idea for Juvenation. The original idea was to provide new opportunities for our great volunteers to connect with each other more readily and freely, regardless of geographic location.  They are our most valuable resource, so we wanted to give them new and better tools to work with.

Kruse:  That’s great. So how did it actually come to fruition?

Lewinson:  We kept trying to get it going internally but we just didn’t have the resources. Then Novo Nordisk approached us after they did the DAWN Youth study, where they interviewed a bunch of young people with diabetes to determine their needs. They found that one of the biggest gaps for them was social and psychological support, so they started looking for ideas on how to meet that need. We had partnered with them on other things in the past, so they came to us thinking that we might be a good partner for that.  They loved the idea for Juvenation and decided to become the founding sponsors.

Kruse:  How does the Juvenation.org site work today?

Lewinson:  We just launched in November of 2008 so we are still adding features, but all the basic functionality is in place, which let’s you create a profile, join discussion groups and forums, accept friend requests and create and comment on blogs.

Kruse:  Who actually built the platform? Did you work with an outside vendor?

Lewinson:  We work with Ignite Health. We are very happy with the work they do.

Kruse:  It launched at the end of last year, what are the results?

Lewinson:  We currently have more than 6,200 members, just from announcing it to our e-newsletter subscribers, Facebook and Twitter followers, and website visitors.  We haven’t really marketed it to the “outside world” yet.

Kruse:  Congratulations.

“We currently have more than 6,200 members…”

Lewinson:  Thank you. And the members are very active on the site. We are approaching nearly 10,000 posts a month. Plus there are also about three to four times as many visitors as members on the site at any given time.

Kruse:  How did you promote the site or how are you getting the word out?

Lewinson:  Well, other than the original kick-off event on World Diabetes Day, it’s been all internal vehicles. We have three different e-newsletter lists that we have put ads in, and we also have an ad in Countdown magazine.  We also gave a challenge to our chapters in May to try and recruit 25 members by the end of the month in order to hit our goal of 5,000 members, and it worked.

We also send announcements through Facebook and Twitter.

Kruse: Other than traffic, have you measured any other outcomes?

Lewinson: Yes.  We have found that people actually improved their diabetes care just in the short time since we launched the site; they are taking better care of themselves.

Kruse: How do you know that?

Lewinson:  We did a survey of members in April.  For half of them, Juvenation.org is the first diabetes community they have been involved in. Some of our findings…

• more than half of the respondants have found the emotional support they were looking for
• 69% feel the site has helped them significantly feel better about Type 1 Diabetes
• 50% say it’s actually increased the attention they pay to their diabetes care.

Kruse:  Has Novo Nordisk been pleased with the results, too?

Lewinson:  Yes, they have.

Kruse:  Any lessons learned from the project or advice to give to others?

Lewinson:  For us, it was important to find a community manager that was already experienced in social networking and respected in the diabetes community. We chose Gina Capone to manage Juvenation because she founded and runs Diabetes Talkfest, another social network, so she is very familiar with the territory.  She in turn has “deputized” some of the more active participants on Juvenation to help her moderate certain groups and make sure we are responding to anyone with a more critical need, like depression or suicide. We have developed policies around those issues and others, and now have a full-scale training for volunteer moderators on the site.

Also, the more feedback you can get from your members and then respond, the better. When we surveyed Juvenation members about what they’d like to see in future versions of the site, most of them expressed frustration about trying to get their friends to understand what it was like to have diabetes. From that feedback we ended up taking a lot of the statements that they were making and made an educational resource center that they can share with their friends.

Kruse: This has clearly been a very successful health 2.0 project. Congrats and thanks for the interview.

Lewinson: Thank you.

Note: Rachael will be presenting the Juventation.org case and answering questions at the e-Patient Connections Conference in October.

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I just released our newest white paper, Patients Rising: How to Reach Empowered, Digital Health Consumers.

Download here: http://bit.ly/VDDvp

With over 25 years of IT experience working at power houses including Control Data Corporation and Oracle, Fred Eberlein comes to patient tools from the technology side of things. His flagship product is a patented, secure web-based approach to pain tracking and management. Fred splits his time between his clients in the United States and his development office in Hungary, and I interviewed him over a crystal clear phone line while he was working in Budapest…

Kevin Kruse, Kru Research: So when did you start ReliefInsite and what was your mission at the time?

Fred Eberlein, ReliefInsite: We started developing ReliefInsite in January 2005. But my interest in pain management started in 2000.  I learned back then that all the issues had been worked out in terms of protocols and logic for assessing pain, but as so often has happened in healthcare, none of this was put it into a digital form. As one who has spent his career in IT, this really amazed me.

Kru:  You focus exclusively on pain management and pain tracking?

Eberlein:  That has been our niche, our strong point. If you look at our website you’ll see that it’s free for patients, and healthcare providers.  But as our focus is on developing customized branded patient diaries/trackers for industry clients - this is where our revenue comes from - we have spent little resource driving traffic to our site. That will change later this year when we introduce the ReliefInsite Community.

Over the longer term, with the website, we are giving it away to ultimately create that community and then be able to create research components of that, reports and other things from the system and that we will sell.

Kru: Unlike many other health 2.0 companies you seem to have a very practical view of business with an immediate eye towards revenues

Eberlein:  Well, we are very nimble and I watch all the pennies. My goal is to create a balance between the web community, the research reports, and then customized development; it should work nicely.

Kru:  Can you give an example of a client who is using your platform?

Eberlein:  We developed the Rheumatoid Arthritis Symptom Tracker site (https://www.rasymptomtracker.com/) for UCB which is currently unbranded. UCB just got approval from the FDA for their RA drug, Cimzia, which is also prescribed for Crohn’s disease. Now that the drug is actually approved we will go through a redesign to match the brand of the drug.

Kru:  Any lessons learned that you can share from you experience with your pain tracking site?

Eberlein:  You commonly hear PHR [personal health record] utilization being at 3% and our stickiness is an order of magnitude better than that, I am happy to say. But frankly I am not satisfied with it. I think one of the big challenges we face now with all this technology is making it part of the patient’s lifestyle and the providers’ process.

I have the benefit of seeing firsthand over the last few years how utilization works. I’ve seen what patients do, what physicians do, and I think you cannot make it simple enough, you can’t make it easy enough, you can’t make it fun enough.

Kru:  What comes next for ReliefInsite?

Eberlein: Technology adoption is a big challenge and things like the iPhone and mobile technologies in general are helping to break down some of those barriers. Mobile is definitely the future.

I think what we really have to be thinking about is bringing gaming into the equation, and how to integrate health tools into our lifestyle as much as we can. Of course that includes integration to biometric devices and other types of things, because the whole idea of monitoring should be pretty much non-obtrusive and invisible to the patient but, of course, with their consent.

Run, don’t walk, to YouTube and setup your own channel. Have a hospital? Set up a channel for your hospital. Have a drug? Set up a channel for your disease state. Trying to get people to wash their hands, or take Vitamin C, or get their blood pressure checked more often? Setup a channel.

Nielsen Online estimates that YouTube gets almost 100 million visitors a month, which puts it right up with Google and Yahoo as one of the top 5 most visited websites on the Internet. And it’s still growing fast.

Click over and look at the J&J channel on YouTube. Go ahead, I’ll wait until you come back… OK, you saw it?

In less than a year J&J has posted over 140 videos, and the top 20 most viewed have garnered a whopping 425,000 views. Additionally, they have over 1,000 loyal “subscribers” who are anxious to view new content as it’s broadcast (er, published?).

Unless you have a mega-brand that is driven by tons of expensive DTC TV ads, I’ll bet there are few product websites out there that get over 40,000 views a month. And when is the last time 1,o00 people asked to subscribe to your branded website?

Need more examples? The Mayo Clinic YouTube channel (with 365 videos) is a good approach for hospital marketers and of course I’ve written before about the amazing job the CDC is doing with their channel.

And the kicker is that web video is cheap. You probably have all kinds of video shot for other purposes that you could repurpose for the web. And you don’t even have to pay for a separate web site or video hosting. YouTube has it taken care of. It’s a mantra…video, video, video.

Novartis deserves credit for jumping into the social media space with a very unique site, CML Earth. Its purpose and audience:

CML Earth is a global interactive social network dedicated to connecting the CML community from around the world. We invite patients, patient groups, and healthcare professionals to join us in building this new online community.

This is an instance of a condition-focused social network which enables patients and their care givers to provide support and information.

The Design

In keeping with the name, the main interface to the site is a beautiful image of the Earth itself and member location is prominent. Like other web mapping program, you can zoom in and out and scroll to different locations. Small circles show where other members live. Most impressive, the site provides support for nine languages.

Like other social networks users can sign-up and enter their name, birth date, and location. But when it comes to telling “more about me” you are forced to select from a series of drop-down menus. Instead of just writing who I love, I have to pick from a list that includes my parents, my kids, etc.

This forced entry system is even stranger as it applies to telling your story. When answering “What I look forward to” you must choose from a pre-set list that includes items like “just being” or “laughing last.”

This forced set of choices for your personal information is so awkward there must be a good explanation for it. I would have guessed that it was so nobody had to screen the entries in the open ended fields, but in fact there is a final open text box that lets you write whatever you want. I just don’t get it.

The main purpose of social networks, or course, is to connect with others. You can see in the image below that you can get profile information on other members and, similar to Facebook “flair”, you can send members signs of encouragement by sending smiles, hugs and high-fives.

When it comes to communicating with another member for some reason it doesn’t seem like too many users have activated that feature. You can go through a lot of members before finding someone who is willing to accept an email from you.

Guidelines and the Adverse Events Problem

When it comes to social media, health marketers often worry about things like spam, adverse event reporting, and negative comments regarding their brand. Novartis handles this with strict and clearly stated policy.

Refrain from sharing any treatment information or names of specific medicines or companies; Do not include any profanity or indecent or inappropriate language, whether in text or image; Do not embed any links in your profile.

So how does Novartis handle the dreaded adverse events reporting problem? Easily-they don’t allow them.  They inform users:

CML Earth is not the place to report adverse events.  If you wish to report a suspected adverse reaction to a Novartis product, click here.

The Business

Many companies are trying to make online patient communities a business, but in that regard most are struggling or failing (eg, Trusera). I suggest that online communities are a valuable tool, but just hard to monetize. To be sustainable online patient communities will have to

1)      be directly sponsored, like Novartis CML Earth

2)      be indirectly sponsored, like JDRF’s Juvenation which is sponsored by Novo Nordisk

3)      be hosted on a public platform, like McNeil’s ADHD Moms on Facebook

4)      be an add-on to an existing health information business

I don’t know what Novartis’ goals are for the site but I’ll bet they’ll exceed them. They have clear corporate branding-no hiding in the footer here-and rather than going for mass adoption they seem to be using this site as a tool to offer the community. It’s certainly going to be something to talk about when they are with physicians, and will earn good will among CML patients.

Areas for Improvement

Some things definitely jumped out at me during the review:

1)      Optimize for search engines-there is almost a complete lack of SEO effort thus far on the site. Keywords are limited to “cml” and “cmlearth”. This is such an obvious oversight that I would think they are purposely trying to fly under the radar, yet they are buying Google adwords to drive traffic.

2)      Tell the world-Novartis should issue a press release and upload their demo video to YouTube. Two simple actions that would drive awareness and a positive image for the company.

3)      Ditch the canned responses in profile-enough said.

4)      Add low-bandwidth or mobile version-the site is beautiful and uses a novel, geographical driven primary interface. But I wonder how accessible this site is in low-bandwidth countries in other parts of the world, and as many people do their social surfing from the mobile phones, a lightweight mobile version or iphone app is in order too.

5)      Provide content-one key that most private networks are ignoring is to provide a library of content. Even though the point is to connect members, a simple library of content-rich articles provides added value, makes the site stickier, and Google loves it too!

Summary

Novartis deserves high marks for jumping into the social network world with a very innovative, slick design. They deftly handle the AE issue with a clear policy. Hopefully they will open up the member profile data, make it mobile friends and do more to promote CML Earth to the rest of the world.

Marketing guru, Seth Godin, recently wrote a post titled, “On Becoming a Household Name.” He comments on the amount of advertising out there that doesn’t even offer basic features and benefits, but rather just puts the brand name out there.  He says “it’s completely irrational” but brand recognition alone works wonders. He writes:

Being a familiar name takes you miles closer to closing a sale. People like to buy from companies they’ve heard of.

“Awareness” has long been recognized as the first step in a long prodding sales cycle. What Seth doesn’t write, but I strongly believe is that while advertising without benefits to me is irrational, it works over time because it builds trust.

Awareness helps to build trust, and trust is the single most important attribute related to sales success.

Now there are many different ways to increase trust, but familiarity is a basic one. Someone approaches you the first time you won’t trust them (kids, don’t talk to strangers!); if you see them around the neighborhood all the time you’re more likely to trust them. If you drive by a company down the street repeatedly for ten years, it’s likely you can trust that they’ll still be there next year. If you see a company’s ad on TV over and over again, at least you can trust they are big enough to afford TV ads!

So what does this mean for healthcare marketers? Consider these scenarios:

• You take your 12-year old daughter to the doctor to talk about getting an HPV vaccine; would you ask about the vaccine you never heard of, or the one you know because you are one of 100,000 fans on their Facebook page?
• You are pregnant and there are three hospitals within a short drive away; would you choose one you have little familiarity with, or the one whose tweets you’ve been following have addressed prenatal care, new parent workshops, and baby name contests?

Seth’s simple statement has big implications for the use of social media for healthcare marketers. Awareness is the first step to building trust and brings “you miles closer to closing a sale.”

Research clearly shows that healthcare consumerism is a reality. Physicians’ choice of medications can be influenced by the patients’ brand request. Women choose which hospital to deliver their babies in. Many choose where to go for their orthopedic surgery, colonoscopy, and cancer therapy.

Is your brand a household name?

“The real value of social media is that it gives you the ability to listen,” one consultant offered.

Another panelist suggested, “I think Twitter and blogs should be used more for corporate communications and PR than for brand promotion.”

The Professor tried to tackle the big issue, “You can’t really measure ROI of social media, but if you look at a traditional marketing model, and assume social media leads to even a 1% increase in awareness, that should lead to big gains in sales and profits.”

I heard these comments from distinguished panelists at recent forum on the pharmaceutical industry’s use of social media. Each comment was offered in response to a question from the audience, and each comment on its own is very valid.

But what wasn’t addressed was that these comments taken all together raise an even larger issue: What is the purpose of social media, and is the return on investment (ROI) question even valid?

The dreaded ROI question seems to come from those who aren’t themselves familiar with social media; many skeptical marketers ask, “What’s the ROI of Twitter or YouTube?”

If social media should be used to LISTEN, then the dreaded ROI question can be batted away with the comparison, “What’s the ROI of focus groups?“  Clearly marketers use focus groups to gain insights all the time and don’t ever pause to calculate its ROI.

If social media is to be used for PUBLICITY, then the ROI question is easily handled with the counter, “What’s the ROI of press releases?”  Press releases are still the bread and butter of PR firms and corporate communication departments and nobody ever asks to see the link between a press release and an increase in market share.

If social media is to be used to increase sales, and I think it can (I can hear the gasps already!), then you can track ROI the same way you would track your other online media campaigns. Like other e-marketing campaigns your call to action can be tracked in total clickthroughs and conversions on specific landing pages.

And all of this is part of the problem, and power, of social media. It can be used for all three purposes: Listen, Promote, Sell.  And it gets confusing to talk about social media when you aren’t clear about what the intent is. Focus groups and surveys give you market intelligence, but they don’t actually promote. Press releases and media tours are great to build awareness, but you don’t learn much about the market. And direct sales efforts drive sales, but isn’t optimal for listening or awareness building.

Social media lets you listen, promote, and sell. And that makes it great, and that can make it confusing.

So what do you use it for? What ROI are you expecting?

The chatter among healthcare marketers with regard to social media often seems to be stuck on the most basic of questions (e.g., What is it? Why should we do it? What about adverse event reporting? How do we start?). Yet, the Center for Disease Control (CDC) has quietly been doing best-in-class new media marketing and education for some time.

The most recent example of this has been the rapid, comprehensive roll-out of H1N1 (swine flu) information.  While the main CDC flu website and their social media tools site aren’t very pretty to look at, they cover all the most important online media tactics.

1. Homepage—their main H1N1 webpage serves as a hub for information clear navigation is matched with robust features including subscribe via RSS or email, links to Twitter, and a strong search function.
2. Search Engine Optimization—SEO is clearly not a priority at the CDC; their main flu site doesn’t even populate the keywords metatags. But being the CDC means you probably don’t have to. Their standard text page, rich in content, indexes well with Google and the number of inbound links to the CDC in general guarantees good ranking results. They are currently #2 behind Wikipedia for “H1N1 flu” and #1 for “swine flu” on Google.
3. YouTube—YouTube now gets more search traffic than any other site except Google (source: ComScore) and delivers over 100 million (yes, 100 million) videos per month. The CDC YouTube channel has 46 different videos with an H1N1 video getting almost a million views in the last two weeks alone.
4. Twitter—the CDC maintains four different Twitter accounts including 2 different ones for the flu, which is a bit confusing. Their main account @CDCemergency has an impressive 170,000 followers.
5. Facebook & MySpace—the CDC fan page on Facebook currently has 6,300 “fans” and their MySpace has 900 “friends”.
6. Mobile—keenly aware of just how many people are now surfing the web from their phones, CDC also provides content optimized for mobile delivery at http://m.cdc.gov/.
7. Flickr—the most widely used photo-sharing site, the CDC has uploaded 15 flu related images to Flickr which garnered over 2,200 views in less than 3 weeks.
8. Podcasts—over 12 audio and video podcasts, in English and Spanish, can be found on iTunes.
9. Widgets—the most innovative e-health marketing tactic the CDC uses is widgets which syndicates content across other websites. Currently you can paste the widget code into your own webpage or blog to offer a real-time map of confirmed cases in the USA, real-time pandemic flu news, and H1N1 tips.

While the H1N1 outbreak is a unique situation and the CDC brings unmatched credibility and authority as a source, there is no reason why any health marketer shouldn’t adopt these social media tactics. Whether you are selling a glucose meter, an RA drug, or promoting a hospital social media can be among the most cost-effective ways to connect with health consumers.

Where should you start? Make sure you have a strong website that is rich in content—content about health or your related disease state, NOT just about your product or service. Make sure you have a YouTube channel with appropriate videos, establish a Facebook page so fans can gather and keep in touch, and begin to participate in relevant communities and conversations on Twitter.

While there is no guarantee you’ll get a million views or 200,000 followers, you’ll certainly be reaching thousands of active health consumers and influencers in your market.