Best Patient Community Award

By Daniel Ghinn

User research informs education website

Healthcare Engagement Strategy Awards 2010

Award: Best Patient Community
Winner: TuDiabetes

At the heart of the vision behind TuDiabetes is a simple goal: to provide a platform for people touched by diabetes to connect. And the social network websites at www.tudiabetes.org and Spanish version at www.estudiabetes.org, run by The Diabetes Hands Foundation, do just that – with almost 20,000 members between them spanning the globe, they form a highly active community of people joined by a common medical condition.

In a recent conversation with Manny Hernandez, Founder of TuDiabetes, he told me why TuDiabetes is all about connecting people. A diabetes patient himself, his vision for the social network emerged after he personally experienced the value of being able to share experiences with others through a support group for an insulin pump he was using. He saw the benefit of being able to share experiences and learn from others, and was able to help others who had only just started using the pump he had been using for a year.

Watch the highlights of my Skype interview with Manny Hernandez where he shares insights and vision from his experience creating and running Tudiabetes.org.

We knew that it was valuable to connect with patients, and when you insert a social networking platform like Ning underneath that, you multiply the ability to make connections possible between patients, and eliminate the physical barriers“, says Hernandez, going on to explain how TuDiabetes makes it easier for people in rural areas or countries with access difficulties to reach out.

Hernandez explains that diabetes tends to be a ‘closet condition’ and people often find it difficult to be open about it. By making it easy for patients to connect with thousands of other people they can relate to easily, TuDiabetes has enabled patients to open up. Asked how he feels this compares with the experience patients have when connecting with a healthcare professional, Hernandez says it’s complimentary:

“Communities like ours are not out there to substitute but rather to compliment the interactions with your medical team. No amount of patient advice can be a substitute for [the advice] you receive from your medical professionals. However, there can be a number of experiences by interacting with other patients that even the most committed medical team will not be able to offer.”

Hernandez explains that there have been many cases where members have learned new things about their condition through TuDiabetes, have gone on to read more, ask their doctor, and gain a better diagnosis, improved treatment or ultimately better health. He talks about examples where patients have been misdiagnosed as having type 2 diabetes and discover through TuDiabetes that they may in fact have type 1 diabetes. This enables them to ask for specific tests from their doctor or to be referred to a specialist so that they can get the correct treatment.

This kind of real health outcome for patients is what we love about TuDiabetes. Hernandez says there are many examples of patients’ lives being improved through what they learned as part of the network:

“We have a lot of testimonials from people who describe specifically how they’ve been able to reduce their haemoglobin A1C number from a higher place to a number in the 6’s or sometimes in the 5’s – that’s practically normal, non-diabetic A1C… by simply participating with others with diabetes who are doing things differently, then going back and discussing with their doctors and incorporating new things into their therapy.”

If you’re a patient with diabetes using the Internet, it’s highly likely you will at least stumble across the work of TuDiabetes somewhere online. That’s because the social network activity is not limited to TuDiabetes’ own website, but integrates with other social media platforms too. Whilst this affects membership of the central network, Hernandez says that interactions between people touched by diabetes on TuDiabetes’ other platforms such as Facebook or Twitter have also grown:

“Interactions between people that are seeking information or support – in this realm or with other kinds of conditions, chronic or not – is going to happen wherever it is most convenient for the person. And it may be as part of a comment in a video, or in a conversation between people in Twitter, or in a comment wall on a Facebook page. It’s important to acknowledge that, in order to not beat yourself over trying to drive traffic in a certain direction. We now see it in a more holistic way.”

This kind of integrated social media approach is evident in some of the most effective engagement activities TuDiabetes carried out in 2009. When members of the English and Spanish communities were invited to participate in a mass blood sugar testing event – testing their blood sugar and then sharing the result via Twitter, over 10% of members worldwide took part.

It was a huge community moment because testing your blood sugar is a very personal moment, a very individual moment“, says Hernandez. “And it was interesting to see people’s reaction to the initiative. Diabetes removes control, and we saw lots of people share – the majority in the normal range, but some high values & some low values. And we saw people very respectfully saying, why do you think you might have that high value, or, go treat that low as soon as you can, and people sharing.”

On World Diabetes Day on 14th November, TuDiabetes ran ‘the Big Blue Test’ and invited several other diabetes communities to participate through their own members, on their own communities. People with diabetes were asked to test their blood sugar, then exercise for 14 minutes, test again, and report on the experience. According to Hernandez, approximately 80% of the 2,000 people who participated reported a drop of around 20 points, just with 14 minutes of activity. He says that many people were shocked to discover that that was possible: “It was a very powerful community moment, and a way to emphasise the value of exercise through the community.

In the run up to World Diabetes Day, TuDiabetes ran the Making Sense of Diabetes program, which was sponsored by Boehringer Ingelheim.

Each week of October was dedicated to a different sense. Members were invited to submit a video of life with diabetes through that sense, with winners announced for each week. At the end of the process, in time for World Diabetes Day, a compilation video of winners was launched.

All these great community moments are the highlights of a lot of hard work that goes in to running TuDiabetes. I asked Manny Hernandez what advice he would give others looking to create a successful patient community online. His advice was highly practical:

  • It’s critical to have at the helm of the community, running the community, people that are directly impacted by it. Because the kind of passion you have when you live with it on a daily basis goes a long way.
  • It’s quite a bit of work, running a community. It’s not just about setting up a website and letting it run – you need to be on top of it. You need to nurture it, and make sure it stays on track.
  • You need to define what ‘on track’ means for you. You need to define what the guiding principles are for your community (and they may be very different from one community to another). The first time that you need to take a hard decision, it helps if you have some clear rules that you are expecting people to follow.
  • Have a clear vision of how you want the community to be. It is extremely gratifying when after a few years, you see that the community has continued to blossom and help others.

TuDiabetes, for your outstanding work achieving real outcomes for patients with diabetes and your constant innovation in social media, we award you Healthcare Engagement Strategy Award 2010 for Best Patient Community.

View all Healthcare Engagement Strategy Awards 2010 winners.

Apply the insights: you can learn how to apply the strategies, experiences, and outcomes of all the winners of the Healthcare Engagement Strategy Awards 2010 in our special international seminar roadshow in the USA & Europe. Find out more or reserve your place.

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Meet the Author

Daniel Ghinn

Daniel has been at the helm throughout the company’s life since 1998. His rich expertise in working with pharmaceutical businesses has enabled CREATION to build business solutions that fit our clients’ needs.

Daniel is married to Jo, has three children, a cat, a dog, 28 fish, and 160,000 bees.