While everyone else is downstairs in the Austin Convention Center learning about Whuffie Points, I’m upstairs in an overflowing l room that is supposed to be a small conversation about “e-patients” The presenter has been involved in online patient support groups as long as I have, but he is now concerned about Health 2.0 sites like PatientsLikeMe, Cure Together, Daily Strength, or even EmpowHer.
He starts the discussion by saying PatientsLikeMe has a research function, and gathers data without knowing how valid that data really is compared to the general population. The conversation quickly gets away from him and becomes a conversation about the pros and cons of data sharing in health care. The leader says no one fully appreciates how long data sticks around online, and reminds us that our online identities have now merged with our offline identities and it’s getting harder to remain anonymous.
And it’s not only the patients. Sermo, the social network for doctors, shares treatment information. THe leader suggests that this information can be sold, or perhaps used again you in hiring decisions.
How does this affect the patient? For as much information as you gain and get back, you are putting important stuff out there for hiring decisions.
This is the moment when Health 2.0 meets Health 1.0 and drowns it out in the room.
People begin to point out that social media can be used to promote prevention, that doctors want to share information, and that discovery lowers costs. People argue that patients are willing to make tradeoffs to get better care, and that corporate cultures are changing, and one day you will not have to hide your illness from your employer.
Yesterday, social media thought leader Charlene Li talked about the difficulty of managing contacts, activities, and identities in the online world. And it’s harder when you participate in a medical site, because of the way the information can be used against you in hiring or sold in another market you don’t know exists right now. How will the platform providers comply with privacy on social networks? Companies like Google will find a way, you can be sure.
In the audience, providers point out that they have to find a balance between privacy and information. Younger generations will feel more comfortable sharing.
Although a paper record seems a surprisingly private thing, there will be a tradeoff of privacy for information.
Millenials and GenYers in the room point out that everything is in a state of flux right now, and that new jobs in new companies will encourage collaboration and sharing, which will change health care. As one attendee said, “Social media is just a continuation of a conversation with a buddy. If I choose to have that conversation, I’m responsible for my own privacy. I just don’t tell people things I don’t want them to know.”
Emergency responders talk about the need for a place to send people to for information that’s not the emergency room, and look forward to a day when social media is used for personal health.
A physician in the room is building a portal that creates a library of YouTube clips that he can send patients to. He says doctors feel imprisoned in their offices and that younger doctors like it when patients come in well-informed.
The basics of the debate are trust and who owns the information. The session ends, but t conversation is just beginning.