Most U.S. social network users would be willing to share information about their health conditions online in order to help improve care, provided that adequate safeguards are in place to guard their
privacy.
Overall 94% of social network users who have health conditions said they would share health information with doctors via social media if they were able to remain anonymous,
per new survey results published by the Institute of Medicine in a report titled “Social Networking Sites and the Continuously Learning Health System: A Survey.”
The same
proportion said they believed their heath information could be useful to researchers and clinicians seeking to improve treatments for their condition.
The need for anonymity is an
obvious concern, as 76% of respondents said they believe their health information might be used without their permission -- including 72% who think it might be used to deny them healthcare benefits,
while 66% who fear it would jeopardize job opportunities.
Doctors are already using social media to connect with each other. Earlier this month, Doximity, a professional social
network for physicians that allows them to communicate with each other in full compliance with HIPAA rules, claimed to have reached a significant milestone with 250,000 members, or roughly 35% of all
doctors in the U.S.
Among other things, Doximity members can tap the expertise of other docs to learn more about conditions and treatments as well as job opportunities, conferences, and
the like.
A number of social networks are bringing together people dealing with the same health conditions, including PatientsLikeMe and E-Patient. Studies from the Netherlands have
suggested that niche social networks can help patients and doctors improve the treatment of chronic disease by encouraging patients to interact with doctors and adhere to care regimens.
A world class site for patients and advocates is www.Medivizor.com This site allows you to enter your specific diagnosis (they are Hippa compliant ) and they will email you information pertinent to you from worldwide medical sources (many from journals not available to lay people). This is the real deal II have a child with a serious diagnosis so have first hand experience with this site).