The issue of regulation has huge implications for innovation in this space. 

Part of the transformation of health care is the new technology that allows smartphones to be used for diagnosis and tracking medical concerns. These mobile apps do everything from monitoring heart beats to managing glucose levels. There were more than 7,000 health-related apps for the iPhone in September 2010 according to a MobiHealthNews study. With the popularity of the iPad these numbers are sure to grow.

However, it’s important to realize that any programmer can develop a health app. Apple puts the responsibility of following regulatory guidance on developers. So when do these apps (and the smartphone or tablet itself) become considered medical devices requiring monitoring by the U.S. Food and Drug Administration (FDA)?

The FDA defines a medical device broadly on their website and have a variety of classifications: “Medical devices range from simple tongue depressors and bedpans to complex programmable pacemakers with micro-chip technology and laser surgical devices.” As we’ve seen with pharmaceutical advertising and promotion, the existing FDA guidelines fail to address the unique issues that arise with new technology. The issue of regulation has huge implications for innovation in this space.
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One doctor diagnosed me with bad luck 

The New York Times recently published an interactive feature with photos and audio of rare disease patients telling their stories. These individuals all have different disorders, yet similar themes emerged in their stories. The themes are also consistent with what we’ve learned at Siren in our work with rare disease patients. Below I’ve pulled some key quotes from the interviews, but I recommend listening to them in full. Please note that since many rare disease patients are children, that these insights may also apply to their caregivers, family and friends.

Rare Disease Patients Feel Alone and Isolated
Rare disease patients feel very isolated and, not surprisingly, seek a connection with others like them. As Wayne Brown, who has acromegaly, said: “The most difficult part of dealing with a rare disease is the loneliness… Knowing other people with the disease is the greatest thing a patient with a rare disease can have.”
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Pharmaceutical companies have also partnered with nonprofits to improve reputation. 

In 2010, consumers cast 61 million votes in the Pepsi Refresh Project. To put that into perspective, there were approximately 89 million votes in the U.S. general election. The Project allows consumers to apply for grants online and the ideas with the most votes each month get funded. Coincidentally, in January there are three rare disease nonprofits in the Pepsi Refresh Project that deserve your vote: National Organization for Rare Disorders (NORD), Jacob’s Cure and Cure San Filippo.

Cause Marketing is Effective
The 2010 Cone Cause Evolution Study found that 41% of Americans said they have purchased a product in the past year because it was associated with a social or environmental cause, a two-fold increase since Cone first began measuring in 1993.

The survey found when a company supports a cause:
• 61% of Americans say they would be willing to try a new brand or one unfamiliar to them.
• Nearly one-in-five consumers (19%) would be willing to purchase a more expensive brand.

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During each chat I typically learn a new thing and have at least one laugh 

I’m proud to say it’s been a year since the first pharmaceutical marketing and social media tweetchat, #SocPharm. The #SocPharm tweetchat (online conversations related to a specific area of interest) takes place every Wednesday from 8 to 9 pm EST. Read more about tweetchats and hashtags.

The goal of the chat was to get people talking about the use of interactive tools, and social media in particular, for pharmaceutical/biotech marketing. I hoped that we’d have interesting discussions on best practices, share ideas and learn from each other. And we’ve definitely accomplished that, as you can see in the #SocPharm transcripts. During each chat I typically learn a new thing and have at least one laugh. What’s great is that not only do we have industry people talking, we also occasionally get patients, doctors and nurses joining in.

We experimented with a live #SocPharm tweetchat at the Digital Pharma East conference. While it was fascinating to be in the room, I’m not sure the people via Twitter had the same experience. It was definitely challenging to live tweet, read the tweetstream and talk into a microphone at the same time!

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