Voluntary Health Associations & Social Software

I'm a keynote speaker for the FVHA (Future of Voluntary Health Associations) Conference in Atlanta today. My job is to give to this community a gentle introduction and overview of concepts and products related to Social Software and Social Networking. (My slides are here - 6.6MB .pdf)

In my research about this community, I find that they have some unique and interesting problems.

The attendees of this conference are a collection of VPs and national directors from major Voluntary Health Associations such as American Cancer Society, American Heart Association, American Diabetes Association, March of Dimes, etc. In turn, these Voluntary Health Associations organize communities in order to raise funds for, and inform the public about the medical implications for the different health problems that each are concerned with. These associations have an organized volunteer base of over five million people and raise in excess of two billion dollars annually. They all have dedicated and diverse volunteer communities which include practicing MDs, scientific researchers, health educators, business executives, and working and nonworking mothers.

I think it is the quantity of people served, the diversity of their communities, and in particular, the need to dive deep into information that makes these Voluntary Health Associations interesting. A women diagnosed with breast cancer will need to make educated decisions about her own health care in order to give informed consent. Yet she may not have the education experience or background to understand the care decisions she must make. She may not even have a current era computer. There are few other online communities that need their members to understand so deeply such difficult problems.

Thus the desire of these associations to look deeper in to Social Software. Of course, their key interest is in better understanding, motivating, and expanding their volunteer networks. They are already experts in the business of organizing traditional communities, but now they have to deal with the changing nature of communities as their members are now using the internet as the primary source of information.

Ideally Social Software can help increase their sense of touch with their volunteers, it can empower volunteers to collaborate and work harder and in new ways, it can increase information sharing and innovation, and it can help drive fund-raising numbers higher.

But the openness of social software comes with a price. For instance, many of these associations are afraid of enabling even simple unmoderated discussion lists, in fear that bad or inappropriate information would be shared. There are also legitimate concerns about the quality, audience level, and attributation for even correct information. In the Q&A after my presentation I tried to explain how, when looking at individual blogs, or individual events of info vandalism, it is not really relevant if the communities and processes behind the Social Software are able to correct or filter those events. This is a difficult point to get across, as it requires people to learn to trust a system where the squeaky wheels and trolls are the loudest.

One particular interesting thing about this conference is that it is one of the first between multiple associations. I know from some other non-profits that I'm working with that they often feel in competition for funds and resources from other non-profits, so I applaud the American Cancer Society for sponsoring this cross-pollination effort.