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Patient Communities: Which Way Forward?

by | Aug 9, 2010

If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group? This isn’t just some health geek...

Patient Communities… at Walgreens?

by | Jun 17, 2010

In May, I spoke at the Chronic Care and Prevention Congress about my most recent report, “Chronic Disease and the Internet.” I talked about the social life of health information and the internet’s power to connect people with information and with...

Health 2.0 DC: Passion and Execution at Scale

by | Jun 8, 2010

I think conferences are deeply affected by the spirit of their host city.  San Francisco has its hackers and dreamers, Boston has its entrepreneurs and ivy, Paris has its pomp and worldliness. At Health 2.0 DC yesterday, my city showed that it has passion and...

e-Patient Judy Feder’s time runs out

by | May 26, 2010

As many of you know, a hard part of being in the world of cancer fighters is that sometimes we lose one. I’m sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her...

A New Conversation About Health Privacy: Who’s In?

by | May 21, 2010

Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care. What does it mean when millions of people flock to share/overshare information, even as Facebook’s default privacy settings have slowly become openness...

Patients Like Me beats Lancet Neurology by a mile

by | May 18, 2010

Patient networks for the win! MIT Technology Review: “Earlier this month, the journal Lancet Neurology published a study showing that the generic drug lithium did nothing to slow the course of ALS … Eighteen months earlier, PatientsLikeMe, a for-profit...

The Decision Tree: How Better Health Can Scale

by | May 1, 2010

“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.” “Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to...

Health Data is Useful… if it Informs Conversations

by | Apr 12, 2010

Dr. Roni Zeiger, MD is currently Chief Health Strategist at Google where he has helped create and lead Google Health.  He continues to see patients on occasional evenings and weekends at a local urgent care center.  Roni earned his MD at Stanford and completed his...

A Patient-Centric Definition of Participatory Medicine

by | Apr 2, 2010

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. This new definition devised by the board of the Society of...

Chronic Disease in Data and Narrative

by | Mar 24, 2010

For the past 5 months I have been immersed in data and narrative about chronic disease. The result, “Chronic Disease and the Internet,” is a report sponsored by the Pew Internet Project and the California HealthCare Foundation. We find that living with a...

Privacy can kill, openness can heal

by | Feb 11, 2010

If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his...

#WhyPM?

by | Oct 13, 2009

Note: if you do not use Twitter an explanation of this post’s title may be in order. #WhyPM is the Twitter hashtag we have been using collectively to announce the launch of the Journal of Participatory Medicine and to mention topics of interest from the Journal and...

Senator Ted Kennedy was an e-patient

by | Aug 27, 2009

CNN’s Elizabeth Cohen makes a compelling case in her column today: How to get Kennedy-esque health care on your budget. Anyone with internet access can gather the information they need to make better health decisions, as e-Patient Dave and Karen Parles did, and...

e-Patients Discover Unrecognized Side Effects

by | Jun 25, 2009

Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don’t detect all the adverse drug effects that may be important. Far too often, serious side effects...

Disruption and the healthcare bubble

by | Feb 21, 2009

At the 25th annual TEPR+ conference in Palm Springs on Feb. 2, Alan Greene (DrGreene.com) gave the opening address. It was inspiring – I wish we had a video of it. Too bad so many attendees opted to skip the keynotes and fly into town late! Like, did you guys think...

A thousand points of pain

by | Feb 14, 2009

Cross-posted from my own blog, and then some E-patients, listen up. We have work to do, work we can do. For the past year I’ve been learning what I can about the American healthcare system. I started this not as an “injured” patient but as someone...

Raise Awareness of the Reality of Rare Disorders

by | Feb 4, 2009

Wendy White, Founder and President of Siren Interactive, contributes this essay: One in ten Americans is living with a rare disorder, but they are often overlooked in the media, in research circles, and in their local communities. The 2nd Annual Rare Disease Day on...

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