Participatory research: it’s not everything, it’s the only thing

Campo Volantin footbridge by dalylab on flickrOne of my favorite structures in Bilbao is the Campo Volantin footbridge, designed by Santiago Calatrava. I went out of my way to walk over it many times while I was visiting that beautiful city. Approaching it was a visual treat and there were always musicians playing on it, an aural treat.

But once you start walking on the bridge, you can’t help but notice the ugly plastic rug that’s been laid down on top of the glass tiles (over a layer of worn-out black strips). Continue reading

Patient Communities… at Walgreens?

Walgreens in Jacksonville, FL

UPDATE: On Feb. 18, 2015, PatientsLikeMe and Walgreens announced a partnership:

“Now, anyone researching a medication or filling a prescription on Walgreens.com can access a simple snapshot that shows how their prescribed medication has impacted other patients on the therapy, including medication side effects, as reported by PatientsLikeMe members.”

One more step away from “crazy” and toward “obvious” on the Natural History of a New Idea scale.

Original post:

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 each other.  Living with chronic disease is associated with being offline – no surprise. What’s amazing and new is our finding that if someone can get access to the internet, chronic disease is associated with a higher likelihood to not only gather health information but to share it, to socialize around it.

I built my talk around two examples of how health care can either take advantage of patients’ shared wisdom (and innovate) or ignore it (and fail). Continue reading

“HIPAA is SO 1996″–Susannah Fox

That’s a direct quote from Paul Tang, of the Palo Alto Medical Foundation, at last week’s meeting of the Health IT Policy committee, of which he is vice chair.

Dr. Tang was riffing on an e-Patient Dave quote, which I read during my testimony:

I want innovation at a rate that resembles the rate of improvement in cell phones and iPods: I want to think, in 2011, that the healthcare tool I started using in 2009 is, well, “that’s SO 2009,” just the way many people think about their cell phones.

It’s a good meme, made better by Latanya Sweeney‘s testimony at the end of the day which asked the committee to start digging in to infrastructure design, not just abstract policy discussions. Here are some quotes I captured:

“The Advance HIT Project (advancehit.org) launches Monday: our goal is to ensure tech decisions are well-informed. My goal was to leave you with hope. Barring that, some architectural designs.”

“I wish that there had been a meeting that included 5 ways to design the national infrastructure, then we asked panelists how their privacy concerns mapped onto those 5 designs.”

Keep following the work of this committee. Their debates go to the heart of participatory medicine: whose data is it? What policies will be in place to allow data liquidity yet protect patient privacy? And to quote Diana Forsythe (yes, again!):

Whose assumptions and whose point of view are inscribed in the design of this tool?

Cyberchondria: Old Wine in New Bottles

Just before Thanksgiving, Microsoft released a study entitled, “Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search.” Ryen White and Eric Horvitz took advantage of a data set that few people have access to (log files from Microsoft’s Live Search engine and MSN Health and Fitness) as well as a survey of 515 Microsoft employees. They also did a great service to those of us who have a problem with the term “cyberchondriac” since they define cyberchondria as “the unfounded escalation of concerns about common symptomatology, based on the review of search results and literature on the Web.” That does not describe most internet users and therefore, people might think about retiring the term from general usage. Continue reading