The Diabetes Hands Foundation
In last year’s Healthcare Engagement Strategy Awards, The Diabetes Hands Foundation’s TuDiabates patient social network won the Best Patient Community Award for its outstanding social network of diabetes patients. Clearly not content to rest on their laurels, The Diabetes Hands Foundation has continued to innovate, build partnerships, and grow its networks. Today, TuDiabetes and EsTuDiabetes, the English and Spanish language social communities for people living with diabetes, together have more than 30,000 members, having grown by 15,500 members in 2010.
But it is not simply the remarkable continued growth in these networks that caught our judges’ attention. Now in the fourth year since the launch of TuDiabetes, The Diabetes Hands Foundation has built upon lessons learned in previous years, adding innovation and making a genuine difference to the lives of thousands more diabetes patients worldwide.
Big Blue Test
In the Big Blue Test, an initiative for World Diabetes Day on 14th November to discover, and share, the difference made to blood sugar levels after 14 minutes of exercise, over 1,000 diabetes patients took part and shared results indicating a 14% drop in blood sugar levels.
The Big Blue Test was originally launched in 2009, and in 2010 it was supported by Roche Diabetes Care to increase awareness of the event. Roche sponsored a video and donated a week of insulin to a child for every time the video was viewed, up to a total of 100,000 weeks’ supply which would support almost 2,000 children over a year. The video was watched over 126,000 times.
Manny Hernandez, President of the Diabetes Hands Foundation, says that the diabetes community at large, beyond TuDiabetes, took part in the Big Blue Test, including many who connected via Twitter. He says that when the Diabetes Hands Foundation were planning how to bring as much attention as possible to the program, they considered using video but needed to find an incentive for people to share it. Roche’s sponsorship of each video view provided that incentive by donating insulin.
It is notable that Roche’s donation did not directly support the Diabetes Hands Foundation, whose goal in this video initiative was to promote the Big Blue Test. Instead the donation was directed back into the community, to two humanitarian programmes: Life for a Child, run by the International Diabetes Federation, and Insulin for Life. “Both programmes serve people with diabetes in situations where they cannot afford their supplies of insulin. It’s an example of the community coming together, doing something themselves and through their friends and family to get as many views as possible, to benefit others, and then parallel to that, the Big Blue Test getting more visibility in front of people who might not otherwise have known about it”, says Hernandez.
New initiatives in 2010 included the launch of HealthSeeker, a Facebook game to help people make healthy lifestyle changes with support from friends. Users take steps, known as ‘healthy actions’, towards lifestyle goals and score points that open up new game functionality as they complete actions. Over 5,000 people played the game in 2010, between them completing over 22,000 ‘healthy actions’. The total number of participants is now almost 7,000.
Hernandez says that HealthSeeker was inspired by the rise of social games on Facebook, and a clear gap in health-focused games. “In late 2009 I was becoming aware of the increased rate of adoption of social games… stats became available that social games were growing at a faster rate than Facebook itself. But on Facebook, we found that there was nothing in the way of social games focused on health. We thought that presented us with a great opportunity to create something that could be useful not just for people with diabetes, but anyone wanting to develop healthier habits.”
HealthSeeker was developed in collaboration with the Joslin Diabetes Center and supported by pharmaceutical company Boehringer Ingelheim. Launched in English and then Spanish versions, Hernandez says that use of the Spanish language version has grown at an even faster rate than the English version.
Ensuring cultural relevance
Operating global communities in two separate languages has meant not only having to consider the language needs, but the cultural impact of language in different regions. “When you think about the English-speaking world,” says Hernandez, “there are a few large areas of populations that you need to take into account when it comes to making something culturally sensitive. But with Spanish, there are many smaller, culturally-sensitive groups that you need to take into account. It is a big mistake to think of all Hispanics as one gigantic group. Argentineans don’t normally eat tacos, and Mexicans don’t commonly eat arepas and so on.”
“Partnering with Joslin worked beautifully, because they not only have a history of being an incredible resource for diabetes education but they also have a dedicated group, the Latino Diabetes Initiative, that does just that. So whenever you see a recipe or a reference to a food in the game, you can mouse-over the food and see its different names. If you have the word bean, it might show ‘frijol’, ‘habichuela’, ‘caraota’, different ways in which it’s named throughout the regions, making it more accessible to a broader range of people and reducing the risk of someone feeling alienated.”
Hernandez says that Spanish and English language communities also have different needs. The need for peer support and information amongst Spanish speaking diabetes patients has meant that the Spanish EsTuDiabetes community has grown at an even faster rate than the English language community. Resources have been developed to address their specific needs, such as live video chat sessions covering areas that the community has asked for, which are then archived as resources for future viewing by members.
The Spanish language community has different cultural needs to those of the English community
In TuAnalyze, an app developed in partnership with Children’s Hospital Boston, members of TuDiabetes track, share and compare measures of their diabetes, and can learn about the measures of others in their region. Data on A1C levels (a measure that provides an indication of a diabetes patient’s three-month average blood sugar level) submitted by members is used in academic research by Children’s Hospital Boston to advance diabetes care. The American Diabetes Association considers an A1C level of under 7 to be the target for somebody living with diabetes.
“It’s an application that helps participants in the network enter, track and share diabetes data”, says Hernandez. Launched in English in May, and then later in the year in Spanish, to date over 1,700 participants have shared their data. A world map shows the average values by region.
The application allows individual patients to see how their own A1C levels compare with those of others in their region or elsewhere. Hernandez says that this can help to encourage members to learn from the experiences of others, about how to control their levels more effectively. “It’s useful to know where you are compared to the community”, says Hernandez.
TuAnalyze also includes a participant survey, providing a deeper understanding of the data, such as participants’ diabetes type; or whether the participant is on an insulin pump or CGM (continuous glucose monitor), or using MDI (multiple daily injections). The survey also provides quantitative data about the concerns of individual participants living with diabetes.
“The ability to quantify things and not just have them at a purely qualitative level is extremely useful… in helping us to make better decisions about what topics are most relevant”, says Hernandez.
Managing the community
What does it take to manage such a rapidly-growing global community? Hernandez says that a dedicated team of volunteers plays a role in community management. Active members of the community who play a proactive role in caring for others may be ‘promoted’ to the role of administrator. 15 people between the two communities, TuDiabetes and EsTuDiabetes, form the core administrator team. “People who are very active become great candidates for later becoming moderators or administrators”, says Hernandez.
An important part of both communities is helping people who join feel welcome and to get some sense of direction, such as advice about where to go and who to connect with. Hernandez says that a team of up to seventy people in a ‘care team’ make a point of welcoming new members. “The care team are folks who may be tasked with welcoming others, or if someone shares that they are going through a really rough time, then the care team may just step in and make sure that no-one who is openly expressing that is left alone”.
“On a weekly basis, there are anywhere between one hundred to three hundred new members joining each community, so that creates a need for several processes and systems to be in place to keep an eye on potential discussions… a particular new member may be someone very interesting to get involved in the conversation because they may have an incredible story to tell.”
Hernandez also says that roles amongst the administration team are focused on different elements of the community, such as by content types – videos, photos, blogs, forums, or ensuring that the community works effectively. “It is not a free-for-all; there are some guidelines that we need everyone to abide by in order to maintain some culture or spirit in the community.”
External collaboration and partnerships
The Diabetes Hands Foundation’s initiatives that caught our eye in 2010 were not all about digital engagement. In September, a collection of poems about diabetes written by members of TuDiabetes was published in a book, ‘No Sugar Added Poetry’, sponsored by Roche Diagnostics. The book is a powerful way of sharing the impact of living with diabetes, and so far over 2,500 copies have been distributed.
“Partnering with people that are open to working with others is at the core of what we want to continue to do.”, says Hernandez. Indeed, many of the successes for The Diabetes Hands Foundation in 2010 have been developed in collaboration with external partners, ranging from other non-profit organizations such as the Joslin Diabetes Center to the commercial pharmaceutical industry.
“If we partner with a pharmaceutical company on a particular programme such as HealthSeeker, or the ‘No Sugar Added’ poetry book, or the Big Blue Test video and so on, there are certain guidelines that we as a non-profit have to abide by, and we put those out on the table and make it really clear what things we can and cannot do, legally, so that those become non-issues as we are agreeing what we are going to do”, says Hernandez.
The Diabetes Hands Foundation has also been able to collaborate with other non-profit organizations to support joint goals. “Last year, around the same time as we had our Big Blue Test video and call for people to share it, the Diabetes Research Institute had another initiative where they had a collage with the word ‘Cure’ that they wanted people to submit their photo for, and in the process they had a matching donation that was coming from another company. So what could have had the potential for a conflict between two groups trying to do their own things to raise awareness and raise funds in the process, we into something where we could collaborate with each other. They helped bring attention to the Big Blue Test, and we helped bring attention to the ‘Cure’… so more people win”.
Advice for others
Hernandez says that it is important not to underestimate how much work it requires to run a community like this. “Prior to launching a community there’s a lot of work, months of planning and preparation, and then when the doors are open to the community that’s just the beginning. Be ready for lots of work”, he says.
“But it’s very fulfilling, very rewarding work. There are people that need the connection, they need the help, out there. Whether you are doing it in a non-profit or social entrepreneurial way, always be mindful of that. It’s the people that have to be served first. If you’re doing it in a socially entrepreneurial way, the revenue will come. And if you’re doing it in a non-profit way, people will notice and support your mission.”
Hernandez also recommends being prepared for disagreements within the community. “There will be days and moments when challenges may seem insurmountable, and you may wonder, ‘why, if a project or discussion topic was started with this goal, why did it turn into a sour argument, a difference of opinion?’ – that is because we’re human. So know that there will be disagreements. I think a fundamental principle is that you keep the community respectful, and people have in mind that it is OK to disagree, but that they do so in a way that they don’t disrespect each other.”
Lessons learned this year
The organic growth of the Diabetes Hands Foundation and its initiatives has created an increasing requirement for resources. Hernandez says that with so many different initiatives taking place, it can be difficult to portray a single identity and this is something he wants to improve.
“The way in which we are perceived is something we can work on”, he says. “Coming up with a more unified sense of who we are in the eyes of the world and making sure that that is consistent with our mission, as each of the programmes are consistent with our mission – connecting people touched by diabetes and raising diabetes awareness.”
To achieve this, Hernandez says that the Diabetes Hands Foundation is working more strategically this year, looking at which initiatives need to be developed further, revisited, or put to rest. “It’s being more strategic about what we’re doing, and trying to make sure that the Diabetes Hands Foundation is around for a very long time, or as long as it’s needed to help people who are living with the diabetes.”
The Diabetes Hands Foundation, for continuing to lead the field in connecting patients to achieve real health outcomes, we award you the Healthcare Engagement Strategy 2011 Connecting Patients Award.
Read about other winners of the Healthcare Engagement Strategy Awards 2011.
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