Patient perspectives: Manny Hernandez
Rebecca Aris interviews Manny Hernandez
Manny Hernandez, diabetes patient and vocal e-patient, spoke with us as part of our patient perspective series. Manny is president of the Diabetes Hands Foundation, the nonprofit organisation responsible for TuDiabetes.org, which provides support and information to other diabetes patients.
He co-founded the Diabetes Hands Foundation with the goal ‘of having no people with diabetes feel alone and people without diabetes learning more about what it’s like to live with diabetes’.
Manny shares with us his experience of being a diabetes patient along with the successful collaboration he’s seen of patient organisations with pharma and his suggestions of what pharma can further do to help like-minded patients such as himself.
RA: Hi Manny, I’d like to start by asking you to tell me about your background and experience of being a patient, and explain how you came to be such a vocal e-patient?
MH: I was diagnosed with type 2 diabetes back in 2002. At the time I was 30 and overweight. My primary care physician came to the conclusion that I had to have type 2 diabetes because I fit the profile, so to speak.
After a few months of trying to get my blood sugar numbers in control with the traditional type 2 diabetes treatment – a series of metformin based combinations – we could not get it under control. At that point he referred me to an endocrinologist who had me tested for C-peptide levels and antibodies and came to the conclusion that I actually had a form of adult onset type 1 diabetes, and put me on an insulin-based treatment.
I later started wearing an insulin pump, and joined an insulin pump users group in my home town, and that was an incredible influence for me to inspire what followed next. In a single hour of being surrounded by people just like me, other insulin pump users, I learnt more than I had by myself and with my endocrinologist’s support in the course of a year of wearing an insulin pump.
It became an incredible influence to later develop the diabetes.org for the social network, I created it along with my wife back in 2007, and we’ve been doing that along with developing a series of diabetes awareness programmes under the umbrella of the Diabetes Hands Foundation that we formed in 2008 .
RA: What inspired you to set up TuDiabetes?
MH: The inspiration for TuDiabetes came from a combination of my own experience as a patient, along with my professional background as a web products and online community manager prior, and ultimately reading about the concept of up-line social networking to areas beyond socialising. I read about this concept in a book called The World Is Flat by Thomas Friedman, which is now quite a bit of a staple. The combination of the confluence of those three things led to the idea of developing TuDiabetes.
“In a single hour of being surrounded by people just like me, other insulin pump users, I learnt more than I had by myself and with my endocrinologist support in the course of a year…”
RA: How much direct interaction do you see between pharma and patient support networks?
MH: The participation of pharmaceutical companies has had a number of different flavours for us over the course of the past few years. One of the first came through the participation of LifeScan who licenced our first diabetes awareness programme called the Word in Your Hand. For this programme we invited participants to write on their hand a word that described how they felt about their life with diabetes, and take a photo and share it with the community. We received hundreds of submissions, and produced a diabetes awareness video in time for a world diabetes day back in 2007. LifeScan saw this video and saw the potential. They licensed the concept from us and developed a cause marketing campaign which lasted for three years called Diabetes Handprint. For every submission from patients they donated $5 to a diabetes charity.
We have also developed a number of other awareness initiatives sponsored by pharmaceutical companies and ultimately there have been other kinds of participation by pharmaceutical companies that I think are starting to show how different and possible their role can be in a social media world.
There are two such examples, one earlier by Roche, and one more recently, by Sanofi-Aventis. In the case of Roche, there was a recall of a certain type of test strips so their social media people contacted me asking if it would be appropriate for him to join in an open way indicating that he was joining on behalf of Roche, to share a document that outlined the serious questions and answers that affected not only their particular meter but all tests strips affected by this recall. We found this was relevant, contextual and invaluable to those people who were affected by the recall. From that point on he remained a member of the community and now people approach him with questions and concerns that they have. So that was a first example which we thought was a very successful one. We said that the rules of engagement are simply transparency. You have to disclose who you are, who you work for, and there’s no marketing happening.
The second experience with Sanofi-Aventis was earlier this year. We had a customer service representative join the community and we talked with them about ways in which we believe interaction can be refined a bit more.
So those are a continuum of example from the licencing to the sponsorship to the live representative participating on the community.
“…we invited participants to write on their hand a word that described how they felt about their life with diabetes, and take a photo and share it with the community.”
RA: Are there other ways in which you’d like to be engaging with the industry?
MH: An extraordinary example of engagement is to provide access to information that otherwise normally does not get tapped into. For example, in Europe and it is similar in the US, every drug that has FDA approval comes with a document which is sometimes referred to as the product information (PI). Extremely valuable and useful data are in this. It contains everything that you would really need to know about the product, its interactions and how it was tried and verified to work.
But extremely few people read it, in part because it is written in a language that is not accessible, and partly because it is in very tiny print. In addition, most assume that everything they need to know is told to them by their physician or dispensing pharmacist. But if you need to take insulin every day and several times a day at that, over time you start to wonder and have questions and concerns, in regards to the product.
The industry obviously has a very deep knowledge of their products. It would be extremely useful to facilitate access to those very pieces of information contained within the PI in a contextual manner, when and if discussion arises in connection to a particular product and a particular area that is detailed in the context of a PI, to direct people to that area in the PI, or even more conveniently to paste that part of the information from the PI for easy access.
I think it makes for an extremely useful use of information that is already approved in a time and a place where it is useful and needed. It would be a very easy way for industry to join the conversation and not be seen as trying to push a product, but rather to make information useful and available when it is needed.
RA: Can you tell me what your impression was of the pharma industry before your diagnosis, and how that perception has changed?
MH: Before I was diagnosed with diabetes I honestly did not have so much of an opinion – positive or negative. What I have found is that when you just look at the news releases, the websites, and the ads, you can have an impression that it’s fairly faceless. But I have met an extraordinary number of people that work in the industry who are very passionate, and a good number of those were inspired to pursue a career in the industry because of a personal connection to that particular disease. In the case of diabetes a number of people from the industry who have come to me who either have the disease themself or have a loved one who has the disease, or they’ve lost a loved one to complications related to the disease. This gives a face to the industry.
I wouldn’t say that has changed my impression of the industry but rather made me aware of a number of very inspiring stories behind people who choose to pursue a career in the pharmaceutical industry.
“It would be a very easy way for industry to join the conversation and not be seen as trying to push a product…”
RA: Aside from trying to humanise itself more do you think there are any other ways that pharma could help to improve the way that it’s perceived?
MH: We are living in very difficult economic times everywhere. It is important for the pharmaceutical industry to look at this and acknowledge that within this economic time healthcare costs also are creating an important challenge for people. In countries where there are extreme levels of poverty, a particular condition like diabetes can throw an entire family into destitution. The pharmaceutical industry can look at these challenges and identify ways in which it can go even further such as increasing extremely valuable patient assistance programmes that are helping people, and philanthropic programmes that are helping groups that help people.
I know of many patient assistance programmes that have been terminated. I know that the pharmaceutical companies have a business to run, but I think it is important that they see themselves in the context of this economic time, and the patient populations they serve.
Maybe they need to think twice before cutting programmes that are helping people, and thinking of the social return on investment beyond the financial return in investment in connection with some of these programmes.
RA: What other resources and support do you think would be helpful for patients with diabetes, that are not currently available?
MH: It is important to try to not reinvent the wheel, and if a pharmaceutical company identifies a patient group or a non-profit group that they see as doing something well, then they should support that initiative or approach that group to see if there are ways that they can jointly resolve things. A patient developed initiative with the support of the pharmaceutical company can go a lot further, because it’s coming directly from the patients. That partnership has all sorts of additional pluses that make for some unique benefits that are otherwise not as easy to accomplish.
“…maybe it is in the form of thinking twice before cutting programmes that are helping people, and thinking of the social return on investment beyond the financial return…”
RA: Finally what would your key message be to the industry? How do you think it can better meet patients’ needs?
MH: It is really important to keep listening, to not be afraid to engage. To not listen because of the fear of uncovering an adverse event and the implications of how to act on it when there’s limited data around it presents an incredibly sadly missed opportunity. People are talking about their health online like never before, and that makes for an extraordinary opportunity for identifying things that otherwise were really hard to uncover before. To choose out of lack of regulatory guidance to not enter that space is a major mistake, and shows some very limited thinking and innovation.
The companies that are finding ways to do it are paving the way, getting ahead and learning a lot, and as a consequence – helping people. If there is a potential for an adverse event to be uncovered wouldn’t be in everyone’s best interest to find out about it?
That’s my closing thought – it is limited thinking to not enter the social media space until there’s enough FDA guidance. Pharma companies should find a way to enter this space!
RA: Thank you so much for you insight.
MH: Thank you so much for the opportunity to share these thoughts.
About the interviewee:
Manny is a nonprofit leader, a recognized social media author and consultant and a passionate diabetes advocate. He has 15+ years of experience in team management and project management and an extensive background in Web Product Development, Content Development and Community Management.
He’s spoken about Social Media for Nonprofits and Health @ BlogWorld Expo, Health 2.0, ePatient Connections, Nonprofit Technology Conference and other events. He’s been interviewed by The New York Times, Bloomberg News, NPR, Fox News Health, Diabetes Forecast and Univision, among others.
In 2007, he co-founded TuDiabetes.org and EsTuDiabetes.org. As President of the Diabetes Hands Foundation (DHF), he’s been instrumental to the development of the DHF’s diabetes awareness programs and continued outreach to offer support and diabetes information to nearly 200,000 people touched by diabetes every month.
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