Mari Carmen Domingo of the Barcelona Tech University in Spain, helps us all with a great overview of the actual practice of physician and patient social networks in the e-Health, July 2010issue of www.computer.org the magazine of the the computer society of the IEEE. Bravo to Mari Carmen. The link above gets you to the abstract and references only, so I'm distributing Domingo's contribution to the wider audience it deserves in the CRM and Health 2.0 world.
That's such a great closing quote that Domingo chose.... health is one of those things that is not just desirable, it is one of the greatest gifts that we can give ourselves or others.
"Healthcare social networks provide an active platform for sharing ideas, discussing symptoms and debating treatment options - tasks that together promise to improve patient care." Health 2.0 is a "movement" which harnesses the Internet to improve health through networks of (ideally collaborating) patients, healthcare givers, healthcare providers - professional or certified, and other stakeholders.
WHY do folks join the movement?
4 levels of engagement by US citizens were identified by the Health Engagement Barometer January 2009
1. 80% are INVOLVED in health, but don't necessarily gather or share info
2. 33% are INFORMED, gathering and sharing information more than once a week
3. 39% are ENGAGED, identifying health condition/treatment by actively gathering and sharing and advocating a point of view
4. 22% are INFO-ENTIAL - influential through information - are INVOLVED INFORMED AND ENGAGED
I remember (video link - Engelbart @ Google) learning in August 2007 that the largest category of searches at that time were related to Health. Domingo list later surveys confirming this trend of using the Internet for health
- 61% of US citizens look online for health information - Pew Internet Project Dec 2009
- 63% perform searches at least once a month - iCrossing survey Elkin 2008
Physician social networks allow doctors to "share clinical cases, images, videos and medical knowledge". 60% of US Physicians use or plan to use a Physician Social Network with 86% depend on the Internet more than any other resource to search for health, medical or prescription drug information.
Examples of physician-only communities:
Sermo - 112,000 members in 68 specialties
Ozmosis
DoctorNetworking
In the exchange by physicians on drugs, devices and treatments, they share direct experience helping each other navigate the growing oceans of medical knowledge and practice. And they can do it real time from anywhere in the world with an Internet connection, and they can do it immediately, sifting through the options with a patient, side by side.
TRUST is the major issue - are participants credentialed and how throughly is that checked? Is information reliable and can it be checked? Peer to peer ranking of the usefulness and relevance of comments has emerged as a crowd-sourcing tool to build reliability and trust, together with the building of online reputations by individual physicians as they comment and evaluate each other's comments.
Patient social networks enable direct patient support by other patients or their caregvers, sharing relevant or related knowledge about illness, healing, recovery and well-being. PatientsLikeMe has 58,000 registered participants who share how an illness affects their everyday lives, an area not often addressed by doctors. Tools for tracking medications, symptoms and health outcomes allow date to be tracked and viewed in easy to understand charts, giving patients the ability to look for others who have similar medical profiles.
Patient networks are a response to highly medicalized formal interactions about the very human essential characteristic: health. Patients are banding together to help each other out in the tough environment of today's health landscape that is impersonal, cost-bound, raining down hard- to-understand generalized abstract information, populated by severely time constrained healthcare providers.
Disaboom is a social network for people with disabilities with 100,000 members who help each other reduce their sense of isolation from general society.
CureTogether has over 7200 patients who track and compare health data, helping scientists to accelerate research into cures.
Reducing anxiety through real time interaction with people who care is a huge benefit of patient networks. The annual Health 2.0 conference held in San Francisco in 2010 is the epicenter for patient networks.
TRUST is the biggest concern in patient social networks - how much can the information there be trusted.
PRIVACY is another issue - in the US with HIPAA the law of the land, the interaction between social networks of patients and social networks of physicians is constrained due to the limits on information sharing. Some approaches www.heartpatients.com let patients control the information shared.
The challenges are formidable - four very different worlds are interacting: (leaving off the drug and medical device industries for now, but they are essential parts of the picture too)
Information Technology
Patient communities
Health Provider communities
Health research scientific communities
As Herophiles said in 300 BC (tip of the hat to Ying Mitchell of www.fitfromthecore.com)
When Health is absent
Wisdom cannot reveal itself
Art cannot become manifest
Strength cannot be exerted
Wealth is useless and Reason is powerless
We have no choice but to move forward, three steps and anticipate and prepare for the real possibility of having to fail, err and take one or two steps back.
System Design and Community Design must co-evolve.
Nothing else than our Health depends on it.
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