Diabetes Innovation: Online Diabetes Communities
I spoke with Manny Hernandez (@askmanny) about the diabetes online communities he founded at TuDiabetes (Engligh) and I spoke with Manny Hernandez (@askmanny) about the diabetes online communities he founded at TuDiabetes (Engligh) and EsTuDiabetes (Spanish) — which include tens of thousands of people with diabetes and their family members — as well as his experience attending the Diabetes Innovation conference last year, and his thoughts on communications regarding diabetes.
Manny was a keynote speaker at last year’s conference and will take part in a social media panel discussion this year.
I am working with the Joslin Diabetes Center to get the word out about Diabetes Innovation 2013, October 3-5, 2013 in Washington, DC. Follow the link for the best rate available on conference registration. This interview first appeared on the Diabetes Innovation blog, idiabetesblog.org.
I asked Manny whether social media can play a role in effecting clinical improvements in diabetes management, and he pointed to the Big Blue Test, an initiative of his Diabetes Hands Foundation. He’s presented data from this project at the American Diabetes Association annual meeting: Folks who participate by posting their blood glucose readings before and after 15-20 minutes of exercise, and engaging in online conversation, see long-term benefits in terms of better management of their conditions. (The before-and-after glucose readings showed a 20% drop on average.) Over 40,000 PWD have participated to date. Look for a social media campaign this fall to promote participation in the Big Blue Test in the month leading up to World Diabetes Day.
We also discussed the need to distinguish between diabetes and uncontrolled diabetes in communications to PWD and the general public, particularly in the formulation: “diabetes kills.” Manny, quoting Dr. Bill Polonsky of the Behavioral Diabetes Institute, said: “The way we speak about diabetes matters as much as how we manage it.”
Manny said that he enjoyed last year’s Diabetes Innovation conference because it brought together many communities under one roof — communities that don’t usually interact with each other, creating a richer environment for collaboration. He’s looking forward to this year’s conference, too, where we can continue to work on strategies for engagement of PWD in order to improve management of their condition.
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Diabetes Innovation Interview with Manny Hernandez
July 25, 2013
David Harlow: This is David Harlow for Diabetes Innovation. Today I am happy to have with us Manny Hernandez, who is cofounder of the Diabetes Hands Foundation, which publishes TuDiabetes in English and in Spanish. Manny is also a consultant focused on social media strategies helping folks adjust to a patient-centric paradigm, and he speaks regularly at events focused on diabetes, health care in general, and on the health 2.0 space in particular. Manny, thank you for joining us today.
Manny Hernandez: Thank you for having me.
David Harlow: So if you don’t mind let’s start by hearing a little bit more detail from you about just what you’re doing these days, what you see as the focus of your current activities.
Manny Hernandez: Well, at the Diabetes Hands Foundation as you said, we are really heavily focused on connecting people that have diabetes. We believe that this is a fundamental way for people who live with this condition, and their loved ones, to be able to better manage their condition, to have a positive impact on their lives. And when that happens, they are in a position to have a positive impact in their community. So that comes in the form of our three programmatic areas. The one that you described TuDiabetes.org, our social network in Spanish and English, EsTuDiabetes.org our social network in Spanish, our Big Blue Test program which is aimed at bringing back the importance of exercise in connection with diabetes management. So people with diabetes test their blood sugar, exercise for 14 to 20 minutes, test again and then share the experience online on the Big Blue Test website. And when they do so, they experience the positive impact that is typical average drop of about 20% in their blood sugar, while at the same time a donation is made on their behalf that ultimately helps people with diabetes in need. So that’s an example of how these connections help make an impact in the lives of others. Ultimately we run the diabetes advocates program, which is a very, very important area of focus and growth for us at this point and in the foreseeable future. While we are observing a clear increase in terms of connection and engagement on the part of patients and their loved ones on and off line, I believe that there is a fundamental need for us to take those connections and engagement to the next level, meaning have all of us who are touched by this condition become more active in terms of influencing the kinds of things that we need to see happening, whether they affect the areas of policy or the areas of funding for research. Basically, owning this condition ourselves, not just on our behalf, but on behalf of the greater community. So that’s kind of the three big areas that we are focused on at this point in the Diabetes Hands Foundation.
David Harlow: So you mentioned specifically one very concrete program talking about exercise and sharing information and measurements and seeing control as a result of taking those steps. How many folks would you say participate in that particular program on a regular basis?
Manny Hernandez: It’s a program that has been in existence since 2010 and since that time we have seen over 40,000 people participate in the Big Blue Test and as a consequence of that more than $250,000 in Big Blue Test grants have been awarded to participating groups, so ultimately helping people with diabetes in need.
David Harlow: I would imagine that that is a particular effort that is guided by some clinical understanding and I guess the broader question is: Where do you see the clinical effects of social media on management of diabetes?
Manny Hernandez: Well, indeed, two of the last three years we have gathered the findings in connection with the program and presented them in the form of a poster at the ADA scientific sessions, the most recent one in Chicago this year. The reference I made to a 20% average drop in blood sugars was one of those findings. We dove deeper into that in terms of like types of physical activities that we – and this is all self-reported data, granted – but types of physical activity and levels of intensity of physical activity and durations of physical activity and their impact on blood sugar levels they see. One of the most powerful findings in general is that maybe to 14 to 20 minutes of exercise can be probably regarded as too little, something that cannot have much of an impact and the program, you know, shows that that is not the case. I mean even as little as 14 to 20 minutes of physical activity can have an impact. Now in terms of social media, this program in particular exemplifies the impact that social media can have on diabetes management. At the mention of the program, it is really that, you know, in the course of the months that it takes place — we do this leading up to World Diabetes Day between October 14th and November 14th — we leverage social media as a vehicle to promote and to incentivize participation. We use hashtags on twitter for this purpose. We share videos promoting what other people have done in the respect that Big Blue Test actually to get people excited about the process and interestingly enough, I mean obviously people with type 1 diabetes by definition or in general people who are insulin dependent need to test their blood sugars more often. So too close by blood sugar tests are not all that uncommon, but what I think is particularly revealing is for people with type 2 diabetes, who normally, who are on an oral treatment, they commonly don’t test their blood sugars as often. So it can be particularly eye opening to see the impact of physical activity – unless you test very frequently multiple times per day or unless you are on a continuous glucose monitor, you normally don’t get that opportunity. So this is the program that, you know, kind of pushes you just a bit to give that opportunity and social media brings it to the front by getting people more exposed to it, sharing their photos about like what they were doing, you know, the before and after readings. Instagram is another vehicle that we have used for it. So, I think more and more we are starting to see social media as a vehicle to incentivize this and many other types of programs that are ultimately aimed at connecting and empowering people to fight diabetes.
David Harlow: Sure, it makes sense if you are doing something like this alone or with one other person, then to share it with a broader community, certainly there is the opportunity for greater feedback and encouragement.
Manny Hernandez: Absolutely.
David Harlow: You recently commented online about the question regarding communications around diabetes in the online community and particularly the need to distinguish diabetes from uncontrolled diabetes, and I am wondering if you could address the question of why that distinction is so important.
Manny Hernandez: I think the distinction matters a lot. When you broadly speak about diabetes and say that diabetes kills, it is a very disempowering message. It is a message that basically if you are, say, recently diagnosed with diabetes, type 1 or type 2, and you are exposed to that message, it is very gloomy. It makes you feel like there is no hope, like why bother, why try. The reality is that most people when they are first diagnosed they are overwhelmed. I mean I felt that way and for the better part of year I was trying to wrap my hands around this condition. What it meant, what it implied, and it even took me many years to get into my head that this was going to be with me for life, or at least until a cure is found for it. So to be exposed to a message of diabetes as a killer by definition I think is profoundly disempowering. What the reality is and what the more complete and more educational message is, and in my opinion, needs to be is, uncontrolled diabetes kills, which is true. I mean uncontrolled diabetes leads to consistently elevated blood sugars which carry with them a number of complications including, potentially, death, over time. I emphasize that difference and this is something that as I mentioned in my comments online that you referred to, this is not my thought, I am borrowing from someone I deeply respect and admire, Dr. Bill Polonsky from the Behavioral Diabetes Institute. I profoundly believe that the way we speak about diabetes matters as much as the way we manage it and in this particular case, in terms of a diabetes awareness campaign aimed at the general public, it matters even more because we can be painting the condition. It is not about painting it rosy, because it isn’t, it isn’t easy, but it is about not disempowering and not dividing the diagnosis and the life with diabetes from the reality of being a condition that can and should very well be managed for a very long and healthy life if you do so.
David Harlow: Sure, and of course it is important to manage the tone of that communication that might be the first exposure to information about diabetes for a member of the general public. I am wondering if you could tell me a little bit about your experience at the Diabetes Innovation conference last year and what you see as your opportunities in terms of coming back and seeing folks there again this year.
Manny Hernandez: Well the experience at the Diabetes Innovation conference last year was tremendous — and I don’t say that only because I had the opportunity to do the keynote one of the days, which was of course amazing — but because I think Joslin was fundamentally was able to bring around the table and bring into the same event audiences that commonly are not present at the same conferences. I routinely attend and speak at many conferences throughout the year and they tend to be heavily skewed toward one particular type of audience, be it medical professionals or patient advocates or researchers or payers or government, but what I saw in DC last year with Joslin at the Diabetes Innovation conference was a very diverse audience that acknowledged all these audiences that I mentioned before, and then some and industry as well, which is key because diabetes, you know, as an epidemic, as a crisis, very much needs the participation of all of those that are affected by it, and all those who have a vested interest, out of health reasons, out of business reasons, out of economic reasons, in it. And I think it was a tremendous success in my view to try and bring all those key opinion leaders, sectors represented and I am very much looking forward to how — no pressure for Joslin this year — but I am sure they are going to raise their game up a notch to see how that is going to grow in terms of number of participants and further diversify participation. I think it is very needed and I don’t think that any organization was successfully tapping that opportunity.
David Harlow: Great, well we look forward to seeing you at the conference.
Manny Hernandez: Likewise.
David Harlow: And what do you see as some new challenges before you beyond the October conference, challenges or opportunities for your organization.
Manny Hernandez: Well I think the biggest challenge and opportunity remains at large, you know, the barriers that I regularly allude to for people who become more actively engaged, which are the stigma, which are the sense of perception I guess that it is someone else that is going to rise up to the challenge and become the voice or the person active and person speaking up on behalf of others with diabetes, I think we have some very tangible and scary numbers that we are facing in diabetes in terms of incidence, in terms of impact and total cost in the US and worldwide and we all, the people affected by diabetes, need to see this as a whole and I think trying to convey that message and the fact that it is not some other person, that it is us, listening to this recording, participating in these conferences, writing blogs about testing our blood sugars or changing our infusion sites on an insulin pump. It is us who need to really, not just to do it for ourselves, but for the community of people with diabetes, with prediabetes, 1 in 3 people in the US at this point and God knows how many more down the line, if we don’t start becoming active at the level that we need to be. So, it is a very big challenge in that it is a challenge that we very much look forward to work with and try and diffuse and ultimately as not just us, but as a greater group defeat because it is us that need, all of us in the diabetes community, that need to rise up to the occasion. So it is a tough time, but it is a very exciting time at the same time and I think, and I look forward to the conversations that will help build up on top of that at the conference and beyond.
David Harlow: Well, great, that’s an inspiring call to action. Thank you very much. I have been speaking with Manny Hernandez, and this is David Harlow for Diabetes Innovation.