Social Media and Health Symposium

We recently held an all-day Social Media and Health symposium in collaboration with the Biotechnology Industry Organization (www.bio.org) at BIO's office in Washington, D.C. Huge thanks to Tricia, Julia and Emily at BIO for helping to make this such a great symposium.

Inspire has over 50 patient advocacy partners, and we provide a wide range of services to these organizations. Over time, we’ve heard many of the same questions from our partners regarding online communities and social media, covering topics including privacy, liability, validity of data, how people use the Internet for health, and more. We crafted the day’s agenda around these questions.

I’m thrilled that 70 executives from patient advocacy groups and health professional associations attended, and we’ve received feedback that they enjoyed it a great deal. Overall it was a very productive and enjoyable day, and we’ll likely conduct additional symposiums in the future. If you’d like to attend, please drop me a line.

I’d like to give an overview of the sessions and our terrific speakers, and as well as to provide links to their presentations.

We started the day with Jane Sarason Kahn, the president of Think Health (www.think-health.net). Jane is a brilliant thinker, the perfect person to give an overview of health on the Internet and consumer-driven healthcare. Jane presented an overview of the economic landscape of the healthcare industry and trends in national health expenditures. Jane provided an in-depth discussion of the ways in which social media tools empower patients and caregivers to take more control of their own health. Jane made a special point to describe the lack of health literacy in the U.S., a factor which, of course, affects how people access healthcare. Jane also presented a brand new study conducted by the AARP which studied how AARP members use the Internet and social media. I’ll write more about this in a future post, but one of the highlights from the study is that people both 50+ and under 20 feel their online social communities are important -- but even more people 50+ (70%) say this than younger people do (58%). This turns conventional thinking on its head, but the results are not a surprise to us at Inspire: the average age of our community members is 55 years old.

Next up was Dr. Derek Hansen, a professor at the University of Maryland. Derek gave a great overview of social media and talked through the definitions of some of the most-used social media tools including discussion boards, social networks, blogs, mash-ups and more. Derek did a great job of giving a high-level snapshot of what tools exist and how organizations can use them. Wikis received a of questions, and members of the audience asked for detail about how information is created and vetted in wikis. This was a great segue into the next presentation:

Dr. Gerry Kane, a professor at Boston College, is a charismatic presenter. A former clergyman, Gerry knows how to get people excited. And the topic of Gerry’s presentation, the validity of community data, is something that our audience got excited about. How do online communities prevent bad data and bad behavior from doing damage? Jerry showed how, in the right environment, good data can drive out bad. That’s exactly what we’ve seen at Inspire. Jerry presented case studies including Wikipedia - how it operates and how quickly the community correct bad data. Jerry described how communities can create top-notch content that, in the case of Wikipedia, competes with traditional sources such as Encyclopedia Britannica. There were many great take-aways from the presentation, but one stuck out: organizations should not assume that ‘if you build it, they will come’. It’s crucial for organizations to foster an environment that welcomes contribution. As we learn over and over again, relationships are key.

The next session showed how health organizations can implement social media tools and strategies. One of our goals for this workshop was to enable our attendees to leave with practical advice about how to implement what they learned. Maureen Rigney and Amy Pearson of the Lung Cancer Alliance (www.lungcanceralliance.org) gave a terrific case study about their community. Full disclosure: the LCA is one of Inspire's partners and one of our largest and most active communities. Maureen and Amy have invested a lot of energy in this community and it shows. They exemplify one of our beliefs that the more active you are in your community the more successful it will become. They talked about change-management and how to encourage and engage community members. They talked about how their community is a great way for the LCA to learn what is important to their constituents and to stay engaged with the people who benefit from their services.

Next, Fard Johnmar, the founder of Envision Solutions and author of the widely-read blog Healthcare Vox http://www.healthcarevox.com/2008/06/the_battle_over_online_content.html spoke about how health organizations can implement a social media communications strategy. Fard pointed out that only a few years ago patients received most of their information from traditional sources such as corporations and government agencies. Over time, patients started to talk more with other patients. This changed the relationships patients have with traditional information sources from a subordinate one to more of a partnership. Fard’s analysis is consistent with what we see: the evolution of a more consumer-oriented health industry. Fard also points out that the ‘command-and-control’ methods that organizations have used in the past as a means to deliver their message are not so effective any more. New collaborative technologies have given people more power, and organizations need to adapt.

Our final session covered the legal aspects of health social media: privacy and liability. Julie Murchinson of Manatt Health Solutions ( http://www.manatthealthsolutions.com/) led off with a great overview of electronic health records and the myths and realities of how our privacy is protected. Julie also discussed whether HIPPA provides a uniform national framework to protect our data. She also posed some concerns about the degree to which each of us controls of our health information. The second half of this presentation was given by Bill Baker, a lawyer and partner at Wiley Rein (http://wileyrein.com/). Full disclosure: Bill is Inspire’s privacy attorney; we chose him because he’s a real expert on the subject, and a tremendous asset. Bill addressed some of the most common questions we receive about liability in social media, including questions around whether health organizations are held liable for activity that happens in online communities they operate. Bill explained Section 230 of the Communications Decency Act and how Section 230 protects Internet service providers from activities that occur on their platform. Bill also covered topics such as the importance of privacy policies, CAN-SPAM and copyright law. This was a great session, and a good forum for everyone to learn answers to tough questions.

So, again, a huge thank-you to our speakers and to BIO for making the day a success. If you’d like to participate in a future symposium and/or if you have suggestions for topics to be included in the future, please reply to this entry or send me a message.

Here are links to the presentations mentioned above:

Derek Hansen
Fard Johnmar
Gerald Kane
Jane Sarasohn-Kahn
Julie Murchinson
Maureen Rigney and Amy Pearson
William Baker