Published: January 9, 2012
Often dismissed as a marketing tool, social media can play a profound role in patient-centered product development. But you have to know where—and how—to look.
By: Amy Munice, ALM Communications, Chicago, IL, USA
The screen went blurry…it darkened into a tunnel…a dizzying series of sounds and images followed…she felt shaky… Emily E. Allen (www.emilyeallen.com), who later became one of the Grand Prize winners in the 2011 Diabetes Mine Design Challenge, had found her muse: a YouTube video posted by Diabetes Mine (www.diabetesmine.com), a voice-of-the-patient site that is part of the global diabetes online social community. This muse gave Allen, who is not diabetic, what she wanted most—a window on how a hypoglycemic attack really feels. Armed with these insights, Allen set to work designing diaPETic, an iPhone/iPod touch app to help young girls deal with the emotions that are involved in being a diabetic teenager and to provide guidance in establishing a glucose testing routine. She was a graduate student of human-computer interactions at the time. Allen mined the insights of diabetics on the Diabetes Mine social networking site to guide her concept to the Grand Prize. Tweets to and from colleagues as she tackled one design challenge after another were also part of the development process. Later came the prize money—so handy for a recent graduate—and many job offers from wise device manufacturers who recognized their need for the skill set of a proven interaction designer.
From Steve Jobs to the Design Challenge
Diabetes Mine started as a diabetes blog eight years ago, when founder Amy Tenderich—a journalist by training and recent mother of a third child—was diagnosed with diabetes. Tenderich says, “Then, you would go to the web and find all this scary medical information, but no support. I decided to create a fun and informative website that would be a place for people with diabetes to connect. When the Wall Street Journal ran an article about patient blogging and included us, we really took off. Then, in 2007 I wrote what I would call a tongue-in-cheek open letter to Apple CEO Steve Jobs asking, “Why can’t you guys, who are so good at consumer product design, help with better designs for clunky medical devices that we have to attach to our bodies?” That post ricocheted rapidly through the blogosphere and the Design Challenge was born.” With its origin in the passion and voluntarism of a newly diagnosed diabetic mom, Diabetes Mine today is part of a monetised alliance of patient social networks that are funded by industry advertisers tapping into lead generation services. Other patient networks remain true nonprofit organisations or blogs funded by happenstance. Huffington Post columnist and Diabetes Stories (www.diabetesstories.com) contributor
Riva Greenberg is a “volunteer blogger” in both arenas, who recounts that she is “living on the largesse of my lovely generous husband.” However, device makers would be ill-advised to think of Greenberg or similar bloggers as dilettantes rather than real market powers. “I’m the published author of two diabetes books and numerous articles,” explains Greenberg. “Since every-one in diabetes seems to have letters after their name, I’ve taken to calling myself a DPE (diabetes patient-expert). I put in a full workweek, likely more, and I both present at and attend national diabetes conferences. I help advise pharma companies and my interest and work is in helping patients with diabetes design a life where they flourish. There’s no doubt my work was discovered and has been disseminated and elevated through the social media space. Similarly, there’s no question that companies creating products and services for people with diabetes can get a good idea what it is like to live with diabetes by looking in the social media space. Through the Diabetes Online Community (DOC) alone, they can see what we talk about and share with each other. Social media is free market research space,” says Greenberg. For three years now, Roche has held an annual social media summit inviting about 35 diabetes bloggers and professionals to exchange thoughts, concerns and needs with them and other key organisational leaders in diabetes, adds Greenberg. “Last year, Roche sponsored a video that three of us in the DOC created that led to a US$75,000 (€57,455) donation to help save children’s lives in underdeveloped nations. They’re doing the same again this year. My experience has taught me that most people at these companies truly care and are compassionate,” says Greenberg.
And, indeed, it is compassion that led electronics and software engineer Gil de Paula, another 2011 Diabetes Mine Design Challenge winner, to apply his skill set to designing medical devices instead of other products. His winning device design is called the Pancreum Genesis (www.youtube.com/watch?v=kAbOMi9wK_c), a reusable core device that incorporates a single-use insulin pump, continuous glucose monitor and glucagon pump to create what is essentially a wearable artificial pancreas controlled by a handheld device, or even by an app on an existing smartphone. Now in negotiation with possible investors from across the globe, de Paula recounts how he tapped into social networks while bringing Pancreum to life. “There’s a huge possibility that the potential investors I’ve heard from did find me via Facebook, Twitter, LinkedIn or one of the patient networking sites. I use www.tudiabetes.org frequently—putting ideas out there and getting feedback from patients that give me very valuable insights into the best features for the product and critiques of my ideas at every stage. Those posts [generate] e-mails from all over the world—recently from Romania, the Czech Republic, Belgium—asking me more about what I am doing. In fact, that’s how I got involved with the Diabetes Mine Innovation Challenge. One day Amy Tenderich called and asked me what I was doing so she could write about it on her blog, and that’s when she told me about the contest.”
Married to a physician, de Paula is well aware that the core of his design is adaptable to a range of other chronic diseases or medical needs where a wearable medical device can sense something happening in the body and then trigger an action—either delivering a subcutaneous drug or perhaps just sounding an alarm telling a patient to take a pill. Another potential application is fetal monitoring in troubled pregnancies: de Paula’s smartphone device automatically sends graphs of recorded activities to obstetricians for on-the-spot analysis and monitoring.
UK cardiologist champions Twitter
Although US physicians still lag when it comes to the professional use of social media, which can be attributed at least partly to the litigious environment in which they practice, the likes of Twitter and Facebook are developing a fan base in the larger medical community. One champion in the use of Twitter to distribute healthcare information is Dr. Alistair Lindsay, a UK cardiologist and member of the editorial board of cardiovascular journal Heart (http://heart.bmj.com). “Two years ago I signed up for Twitter personally and realised that the potential impact for my professional interests was huge,” recounts Lindsay. “I subscribe to 1100 twitter feeds by scoring certain keywords (#stent, #carotid, #atherosclerosis, #PCI, #MRI) and monitoring for any updates. I would advise any device manufacturer not to hold back and if they have 100 tweets a week to make, then do them. For example, I want and need to know when a new drug has been approved by FDA. Some of the most useful tweets have been about videos showing new stenting procedures. Device makers are missing out when they don’t use these networks to tell users of their devices what to expect. For example, patients who need defibrillators get a shock, and it is very difficult for them psychologically. If this were communicated by the device maker, it would not be as difficult,” says Lindsay. What surprises him is that pharmaceutical and medical device makers are not making better use of the patient networks on the web or Twitter to reach physicians. “Designers of pacemakers spend lots of money on designs that are too bulky and otherwise not user-friendly,” he notes. “They then do expensive and time-consuming patient and physician surveys with complicated feedback that is difficult to digest. If they keep their ear to the ground in these online networks they will get both the gripes and the good feedback. They should also know that busy physicians such as myself would much prefer to find new product information in a timely manner of their choosing rather than having to deal with company reps in a pressurised sales situation,” says Lindsay. Lindsay practices what he preaches—sending tweets to Heart subscribers with a link to each new issue’s table of contents. “Now that Google has introduced Twitter feeds into its search, it also makes it much easier to avoid out-of-date information,” he adds.
Perhaps because medical matters touch lives—above and beyond lucre—it has been among the first spheres on the web to spawn a subindustry dedicated to sorting fact from fiction. Primarily US-based Organized Wisdom (www.organizedwisdom.com) is one such entity, a for-profit organisation that hopes to enhance physicians’ online presence by giving them a way to easily provide resources for their patients and to grow their practices. Organized Wisdom vets clinicians and other health experts on the web and builds a digital office with them that includes enhanced profiles, digital health libraries and scheduling functionality, among other automated systems for practice management. It helps its physician clientele distribute authoritative resources and news related to treatment, prevention and medical device developments to a growing patient population looking online for answers. Julie Bohlen, Organized Wisdom’s VP of Professional Services advises, “When people are searching out information about devices on the web and all that they can find are bloggers who do not have the background or training that physicians have, they get stuck. People do want to see what clinicians and medical device manufacturers discuss. What people do not want to see is a lot of sales content. They want to know about the device company’s humanitarian efforts, too. They want to know that you as a device manufacturer care about them. If you make social media all about promoting your product and not about bettering the quality of health information online, it is not a plus.” The foolproof way to get the right mix in social media messaging and pave the path for future patented technology, above all, is to focus on listening.
Allen, de Paula and other Diabetes Mine Design Challenge winners, and all new product developers tapping into the likes of Twitter, Facebook and LinkedIn and disease-specific niches in the blogosphere at every stage of medical device development, could well be the harbingers of engineering and design school curricula in the not-so-distant future. Social media is typically thought of as a marketing tool and not as a product development goldmine. When that trend reverses, it will herald the dawn of a new age of truly patient-centered medical devices delivering unprecedented quality of life to people suffering from diabetes and other chronic debilitating conditions. Amy Munice is the founder of ALM Communications