Community can be a very powerful force in health. It is the central notion behind the idea of public health and wellness, but it is also a little bit of a juxtaposition. Many people view their personal health as a private matter, but as the online movement drives right into the world of patient communities, this line is increasingly becoming blurred. It’s partially the same reason: community support can help make health public, and as such, more manageable.
Last week, as a part of Digital Capital Week here in Washington, several thoughtleaders in the digital health space got together to discuss how open information and public channels change the role of patient’s in their own health. Led by Dr. Val Jones of Better Health, Susannah Fox from the Pew Internet and American Life Project, Maya Linson from National Association of Public Hospitals and Health Systems, and Erin Enke from TogoRun led some great conversations on the role of digital in the public health revolution.
A few interesting discussion points came up, so here are five different things to think about regarding the landscape of digital health.
The Chronic Disease Question
There isn’t some statistic from recent research that demonstrates that a majority of people with chronic health conditions are active online, but, as Susannah Fox commented, the evidence suggests that those who do participate are very active. That means that digital doesn’t necessarily help get to the wide audience related to some disease or health condition, but the people online who you could reach are likely heavily engaged.
The Sharing Factor
It may be surprising to find out where the results of a health query end up going after someone turns to the public channel to find health information. As Fox noted, 2/3 of people who search for health information online (a universe which we understand to be nearly more than 4/5 of Internet users) share what they find. The question is with whom – and it appears to be friends and family, not medical professionals.
Credential-Free Doesn’t Mean Trust-Free
Erin Enke made a point that seemed to resonate well through the live and Twitter audiences (you can go back and check #DigitalHealth for the latter): when patients participate in health communities, they don’t have medical credentials, yet still earn the trust of their peers. That may also mean, though, that when approached by a PR or marketer, they could be surprised by the role they’ve earned through the trust of the community.
Overcoming The Credential Concern
A great question was posed to the panel towards the end of the session: is self-policing within patient communities enough to overcome the vetting concern? If anything, primary sourcing information is not really that prevalent on any health site (only three percent of health sites clearly source information with date), user-generated or professional. Communities rely on trust because the Internet changes the value of primary sources, the group must rely on authority to determine validity.
When Patients Talk, But Staff Can’t Respond
In a HDCU a few weeks ago, we touched on the different ways hospitals leverage social networks and digital media. Maya Linson brought up a really interesting point: many facilities block access to social networks like Facebook and Twitter on employee terminals. Patients, though, may not realize this as they air their concerns of questions on the channels, and then further get frustrated by a lack of response. It’s not enough that we live our health in public, but now that we’re more open with it, a response is expected.
Image credit: badjonni
