Society for Participatory Medicine
e-patients.net blog
health information
found on the net, hc's problem list, medical records
Let’s Get Medical Info as Good as Our Pets Get! — A Petition
SPM member Ken Farbstein sent us this invitation to help persuade the Office of the National Coordinator for Health Information Technology to include printed summaries of doctor visits in the ONC’s definition of meaningful use. After our pets go to the veterinarian, many of us promptly and routinely get a paper summary that instructs us [...]
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Health Info Have-Nots
I just published a quick take on who doesn’t gather health information online, including the stark finding that three-quarters of U.S. adults who have less than a high school education say they do not get health information online. One survey question I cited dates back to 2002, but I think it is still interesting. Here’s [...]
Read Morefound on the net, medical records, policy issues, trends & principles
Chilmark: “Where is the consumer in HIEs?”
As we adopt new technology NOW is the time to think strategically: “As I make my next move, where do I end up? How am I positioned for the next step?” Patients have a lot at stake in adoption of Health Information Exchanges (HIEs). Chilmark Research has posted a good summary of how we patients [...]
Read Moremedical records, policy issues, pt/doc co-care, Why PM
Tell HHS: What’s the role of patient generated data in Meaningful Use?
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 [...]
Read Morept/doc co-care, Why PM
Calling All Physicians: Support the Participatory Medicine Movement
Participatory Medicine is a new paradigm in healthcare, one that promises to enhance healthcare efficiency, transform the experience for both the patient and their providers, and improve healthcare outcomes. This cultural shift requires adaptation among healthcare professionals (including physicians) as well as patients and caregivers. And yet changing culture amongst physicians remains challenging, for a [...]
Read Moredemographics
Access is (almost) everything
Or: Why health geeks should pay attention to internet access geeks. The Pew Research Center’s Hispanic Project and Internet Project just released an in-depth look at internet penetration across racial and ethnic categories in the U.S.: Latinos Online, 2006-2008 From 2006 to 2008, internet use among Latino adults rose by 10 percentage points, from 54% to 64%. [...]
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The Pew Internet/Health FAQ
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 [...]
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Participatory medicine and health data rights on NPR
NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on [...]
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Tell the FDA the whole story, please
I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…) So when I saw Jonathan Richman‘s tweet the other night, I couldn’t resist it: Anyone ever seen data on the overall accuracy of [...]
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Superheroes and rock stars at the Institute of Medicine
Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video. ___________________ The Institute of Medicine’s recent [...]
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