Health 2.0 DC: Passion and Execution at Scale

June 8, 2010 · Filed Under patient networks, policy issues · 19 Comments

Stars & Bars: DC's flag

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 execution — at scale.

Leave it to others to point out this city’s shortcomings. The Washington, DC, I know draws in the best & brightest, engages in debate, and gets things done.

Tim O’Reilly recently said that within the federal government he has found “an intense passion among people trying to make change.” Todd Park, CTO of HHS, expanded on that theme yesterday as he described his federal co-workers as just as smart, just as creative, and just as entrepreneurial as anyone he worked with in the business world.

We didn’t need to look much further than David Hale and his presentation of Pillbox, a partnership between the National Library of Medicine and the Food and Drug Administration. Read more

Tags: Chordoma, Data Transparency, David Hale, Gov 2.0, health 2.0, Indu Subaiya, Institute Of Medicine, John Mendelsohn, Josh Sommer, Ken Buetow, Patrick Soon-Shiong, pillbox, Tim O'Reilly, Todd Park

The Power of Data and the Power of One

May 5, 2010 · Filed Under policy issues, trends & principles · 30 Comments

I am struck, once again, by the power of data and the power of one.

Carlos Rizo, Chief Imagineer of the Health Strategy Innovation Cell, posted this very intriguing tweet on May 2:

The power of open data: To find problems in complicated environments, and possibly even to prevent them from emerging.

Clicking through, I saw it was a quote from this eye-popping post: Case Study: How Open data saved Canada $3.2 Billion. The writer, David Eaves, concludes (emphasis added):

When data is made readily available in machine readable formats, more eyes can look at it. This means that someone on the ground, in the community (like, say, Toronto) who knows the sector, is more likely to spot something a public servant in another city might not see because they don’t have the right context or bandwidth.

Where have we heard that before? How about every e-patient story, um, ever? Or, as Regina Holliday recently testified, “I may not be an expert at my husband’s disease, but I am an expert when it comes to my husband.” That’s the power of one person, to care so much about someone that they will read his entire medical record.

If someone is motivated enough to dig, interested enough to analyze, and knowledgeable enough about their chosen topic to see data with fresh eyes, they can start a revolution on a small scale (like preventing medical error for a loved one) or on a large scale (like exposing widespread corruption). Read more

Tags: Carlos Rizo, Gov 2.0, health 2.0, open data, Personal Democracy Forum, pew internet project, Regina Holliday, Ted Eytan

Health 2.0 Europe: A Moveable Feast

April 19, 2010 · Filed Under demographics, trends & principles · 26 Comments

Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building.

Health 2.0 Europe began, for me, in February, when I started thinking about some of the topics that the Patients and Online Communities panel would discuss. My post, “Privacy can kill, openness can heal,” kicked off a discussion about health data rights, the role of health professionals, security/confidentiality/privacy, patient-driven research, and why relatively few patients have joined formal patient communities while naturally-occurring communities on Twitter/MySpace/Facebook have blossomed. Read more

Tags: ACOR, california healthcare foundation, cancer, Chronic Conditions, chronic disease, diabetes, health 2.0, Heart Conditions, High Blood Pressure, Internet Users, Lung Conditions, participatory medicine, patientslikeme, pew internet project, Pew Research Center, Sharing Strength, Social Impact Of The Internet

The Decision Tree: What to Expect When You’re Expecting a Long Life

February 14, 2010 · Filed Under general · 32 Comments

Warning: Do not read The Decision Tree unless you’re ready to make some kind of change in your life.

Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking root: clear labeling on drugs & food, passive tracking of our exercise routines, open access to our health data.

There are enough lessons for self-improvement in the book that I found myself comparing it to What to Expect When You’re Expecting, but since Goetz focuses on the big picture (prevention, diagnosis, disease management) it is more like What to Expect When You’re Expecting a Long Life.

Unlike the pregnancy bible I read 10 years ago (and more than once threw across the room), Goetz doesn’t preach from a lofty whole-grain pulpit. He doesn’t think we should ask people to do more, nor should we scold people for every mistake they have made, but rather we should give them tools to make better health choices. Read more

Tags: Decision Tree, health 2.0, participatory medicine, Quantified Self

Privacy can kill, openness can heal

February 11, 2010 · Filed Under patient networks · 64 Comments

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 post, The German privacy paradox:

I prefer to turn the question around now and look at the benefits of publicness that we lose when we make something unnecessarily private. I’ve said that revealing my prostate here brought me great value: support, links to sources of information, incredibly candid and helpful previews from patients who’ve gone before, and the opportunity to spur others to check for the disease. Without revealing my cancer in public, I’d have received none of that benefit. I also argue in WWGD? that there’s value in the aggregation of our knowledge: if we all chronicled what we were doing 24 hours before the onset of my other condition, heart arrhythmia, would doctors find new patterns? If we all shared and could analyze our repair records for our Toyotas, would we surface dangerous flaws earlier? Not revealing such data may indeed someday be seen as antisocial.

The first time I met Gilles Frydman, I asked him about ACOR’s privacy policy. He shrugged and smiled, “Our policy is that you have no privacy.” Social sharing on the ACOR listserves is expected, if not required. That prepared me for meeting Ben & Jamie Heywood, whose ferocious belief in openness has found expression in the PatientsLikeMe platform.

Ben, Jamie (it turns out), Gilles, and I will be on a “Patients and Online Communities” panel together at Health 2.0 Paris (along with four stellar EU panelists – check the agenda). It’s a hugely broad topic and I’m already thinking about the issues I’d like to discuss (including openness, health data rights, and whether consumers really understand the choices they make). What else should we talk about?

Tags: ACOR, health 2.0, patientslikeme, privacy

The Economist picks up the meme again

July 9, 2009 · Filed Under found on the net · Comment

I suspect this has caught the attention of many of our readers, but I’ll emphasize it anyway. The Economist often comments on technology and health-care. Recently, they talked up Health 2.0 a bit. What I was most struck by is the handful of comments. Most focused on how the Economist piece helped emphasize the shifting relationship between patient and provider, as well as the need for engagement! Wonderful stuff.

Tags: Economist, health 2.0, technology

Mobile could be a game-changer – but only for those who get in the game.

April 23, 2009 · Filed Under trends & principles · 24 Comments

Original title: Health 2.0 meets Ix: Susannah Fox’s presentation

Here are my prepared remarks for the “Navigating the New Health Care Delivery System” segment at the Health 2.0 meets Ix conference (with the lines I added to respond to other themes brought out during the conference in bold)

“Is Health IT the answer? Only if it helps foster relationships.” What a powerful statement about the role of technology in our lives. Ideo’s interviews uncovered trends which are reflected in the national phone surveys conducted by the Pew Internet Project.

Participatory medicine is taking hold with both citizens and health professionals.
Read more

Tags: california healthcare foundation, health 2.0, information therapy, mobile, participatory medicine, pew internet project

Health Care Law Slides

January 15, 2009 · Filed Under found on the net · Comment

Bob Coffield’s slide set, Consumer Driven Health Care: The Impact of Social Media and Health 2.0, is a lawyer’s eye view of the current market. Plus he included a couple neat Wordles.

Tags: consumer driven, health 2.0, law, PowerPoint

Participatory Medicine: Text of my speech at the Connected Health symposium

November 3, 2008 · Filed Under trends & principles · 3 Comments

I should have posted this when I posted my slides, but better late than never. Read more

Tags: connected health, health 2.0, participatory medicine, pew internet project, social media

Health 2.0 Northeast Meeting Review

October 9, 2008 · Filed Under news & gossip · 4 Comments

I along with e-Patient Dave, Dan Hoch and Danny Sands, attended the second Health 2.0 Northeast meeting in Cambridge, Mass. on Tuesday night (Oct. 7, 2008). It was an initially well-attended event, with up to 150 people who came out to network (old-school style!) and listen to some presentations on local startups.

Tags: health 2.0

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