Patient Communities… at Walgreens?

June 17, 2010

Walgreens in Jacksonville, FL

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). Read more


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

May 21, 2010

Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care. Read more


Big, deep Time article on “oversharing” & privacy

May 20, 2010

@ej_butler (Brisbane’s Ed Butler) pointed out an extended online version of  ”In Praise of Oversharing” from Time, May 31. Thoughty and nuanced, with a healthcare spin.


Health Geek Radio: Adam Bosworth’s Straight Talk Express

May 4, 2010

Adam Bosworth of Keas delivered quite a lecture yesterday at the Alliance for Healthcare Foundation. He talks about how Americans don’t really like data (but they need it), why “frugal innovation” is the best path for start-ups, how e-Patient Dave shook up the EHR world, why health privacy legislation would kill patient-driven research, and why texting is way more promising than any smartphone app.

I call this “health geek radio” because you should just listen while you are doing other things – the visuals aren’t great.


Health 2.0 Europe: A Moveable Feast

April 19, 2010

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


Tell HHS: What’s the role of patient generated data in Meaningful Use?

April 14, 2010

Next Tuesday Regina Holliday and I are among those testifying to the Health IT Policy Committee’s workgroup on Meaningful Use.  Please help me decide what to submit for my testimony.

My session is Panel 2:  Incorporating Patient-Generated Data in Meaningful Use of HIT. Questions:

a. What is the role of patient-generated data in improving health of individuals?  What is the evidence?

b. How can patient-reported data be integrated into EHRs and the clinicians’ workflow to improve care management?

c. How can future conceptions of personal health information platforms and information tools facilitate patient-centered care, including transparency, coordinated care, patient activation, while protecting patient privacy?
d. What is the role of the patient in ensuring data in EHRs is accurate?

e. What are your recommendations for meaningful use criteria for 2013 and 2015 that are achievable by a broad spectrum of providers?

What should they hear?  Comment please!

They always welcome additional thoughts beyond the specified questions, so fire away.


Healthcare’s Privacy Problem (Hint: It’s Not What You Think It Is )

March 25, 2010

Lygeia Riccardi’s post today on The Health Care Blog begins: I recently applied for life insurance. The broker, whom I’ve never met, asked about my health history. “So you’ve just had a baby,” he began. I asked him how he knew. “You’re on Twitter.”

Read her whole post


NPSF’s magnificent Universal Patient Compact

March 23, 2010

One of my personal pleasures in the first year of the Society for Participatory Medicine has been discovering people in other parts of the “patient culture” who’ve been doing wonderful, empowering, participatory things for years – and who’ve already been producing valuable results for years. Example: the patient safety movement.

On Paul Levy’s blog I learned about Linda Kenney, founder of MITSS; I met her and wrote about her here. Through her and others I met folks from the National Patient Safety Foundation, and especially its Lucien Leape Institute, which published a major report this month with a solid systemic look at cultural challenges in paternalistic medicine. Even got to be in a small group workshop with Lucien himself last fall. (Didn’t know who he was, but I thought “This guy knows his stuff!” Funny.)

Sometime this winter I got my hands on this magnificent NPSF document. Any of it sound familiar?
Read more


Privacy can kill, openness can heal

February 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 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?


The Pew Internet/Health FAQ

November 20, 2009

A big part of my job, and one I love, is answering questions, mostly from reporters. Sometimes I have just the data or insight someone needs, often I recommend someone else.

Here is a sample of frequently-asked questions and my current answers. Please add your questions and answers in the comments: What are you curious about when it comes to technology’s impact on health care? What resources do you recommend?

Is a cultural shift affecting health care?

Yes. Thanks to the internet, people increasingly expect to have access to information.  They increasingly expect to be able to comment on and easily share information.  And it turns out that participation matters as much as access.

This is my favorite topic and I could talk for hours (or for 4:21; 4:44; 3:06; or 4:50). Read more


Next Page »