Ted Eytan's April 16, 2008, iHealthBeat column lays out the benefits of providing real-time, secure access to health records: "As our profession understands the benefits of patient partnership better, more medical groups are discovering that there aren't compelling arguments for keeping patients' information secret."
Doctors Discuss How to Deal with e-Patients
"A well-educated patient is easier to treat. A badly educated patient is very difficult to treat."
This and other choice quotes you'll find in, How to deal with the digitally empowered patient, a four-doctor roundtable discussion hosted by Scott V. Haig, MD. an Assistant Clinical Professor of Orthopedic Surgery at Columbia University. It was published in the April 2008 issue of Orthopedics Today.
Patient 2.0
Check out this interview with Matthew Zachary, founder of ImTooYoungForThis (cancer resources for GenX and GenY).
The Players in the PHR Space
Want to know who wants to be your next personal health record (PHR) provider? Check out this great run down of the current players in the PHR market, along with some insights into what motivates them to be the company between you and your personal health information.
Women Healthcare Executives & e-Patients
e-Patients Scholar, Cheryl Greene presented the e-Patient perspective to women healthcare leaders at X2HN. Her talk titled, Making the Most of Health 2.0, was presented at their annual meeting in San Diego, CA. In the audience was Congresswoman Nancy Johnson.
Medscape Editorial
Check out this video editorial by Dr. Danny Sands entitled "ePatients: Engaging Patients in Their Own Care." (Note: sign-up is free for site access.)
New York Times and e-Patients
Check out Dr. Alan Greene's guest expert Blog on NYTimes.com. He's answering readers' questions e-Patient style!
Joe & Terry Graedon are featured in The Rambler this month. Here's the interview excerpt, which includes an awesome photo from 1973.
Susannah Fox on ePatients and the Health 2.0 Revolution
Not sure how we missed this (bad blogger!), but our own Susannah Fox from the Pew Internet and American Life Project was interviewed for HealthDot a month ago. Check out the interview here.
A Health 2.0 Overview, Through the Eyes of a New Diabetic
Wondering how good the Health 2.0 revolution has been so far to patients? A great overview of the Health 2.0 world through the eyes of a newly-diagnosed diabetic is well worth the read. It describes the general health tools available to patients today, as well as some specific diabetic resources.
MicroSoft & e-Patients?
Personal Heath records have long been an issue for e-Patients. Today MicroSoft announced that they have the answer: www.healthvault.com. Although no launch date announcements have been made by Google, the rumor is they are working on the answer, too. Looks like the race is on! But how will that impact e-Patients?
Gov Gab on Organic Food
USA.gov just launched a blog and one of the first posts explains the 4 categories of "organic" food, a good basic tool for people trying to avoid hormones, pesticides, etc.
"Communication between Physicians and Patients in the Era of E-Medicine"
The New England Journal of Medicine has a "Perspective" by John H. Stone, M.D., M.P.H., on how E-Medicine is changing the doctor-patient relationship (June 14, 2007). Here's a memorable quote: "The 'laying on of hands' will increasingly include the pressing of keys."
How do you afford healthcare for so many people?
Bloggers at "Et tu?" are discussing Healthcare costs these days and came to the conclusion that one way to help reduce Healthcare costs is by using trusted Internet sites such as WebMD and DrGreene.com. You can read or join the discussion at "Et Tu?"
What is the Place of Complementary and Alternative Medicine?
I have puzzled over this question many times. Today, I found a web site called "The New Medicine" that was based on PBS documentary that has a lot of balanced content about the role of CAM in patient care. I think it is worth a look!
-Charlie Smith
Daily Kaizen
I just rediscovered Daily Kaizen, a health care provider blog that maintains an e-patients perspective. I think Ted Eytan, one of the blog's authors, lives in the future, so I'm always curious to see what he's up to.
- Susannah Fox
Personal Health Records
Since keeping track of your own health records is part of the e-patient responsibilities described by Charlie Smith in today's post, I thought I'd point out a study sent to me by Lorenzo Moreno, an analyst at Mathematica Policy Research.
His team conducted 3 focus groups with people living in medically underserved sections of New Brunswick, NJ, to find out what features they would like to have in a personal health record (PHR). Then they reviewed 21 existing PHRs to see how reality matches up with these consumers' wishes. Check it out: Personal Health Records: What Do Underserved Consumers Want? (PDF)
- Susannah Fox
Too Radical?
I have been struggling with what kind of post should go into the "found on the net" column, but finally discovered something that must certainly qualify. Granted, I'm a little late in drawing attention to it, but better late than never. About two weeks ago, one of my favored political bloggers, Glenn Greenwald, ventured into the healthcare arena and posted a short piece entitled "What is the rationale behind the prescription drug laws?" The authors premise? Why he does a competent adult need a doctor's "permission" to obtain a medication?
I recommend the post and the comments section to anyone interested in the role of patients in healthcare. (a day pass to Salon.com is free if you're willing to view a brief "commercial message")
May 11, 2008 Randy Pausch, empowered patient / participatory medicine
Chapter 12 of Randy Pausch’s best-selling book The Last Lecture opens with a classic anecdote of what it looks like when an empowered patient practices participatory medicine with an equally participatory care team:
These guys crack me up. Investors and disrupters to the alert!
MassTLC (the Mass Technology Leadership Council) is running a meeting on June 5 about the supposedly burgeoning business of healthcare IT.
Their early announcements only mentioned a system vendor and a system buyer, with additional panelists to be announced. I've run conferences so I know what it's like to find panelists, so I wrote to them suggesting that the consumer/patient perspective was missing, and volunteering to be a panelist.
I emphasized that I'm in high-tech marketing so I completely understand the business side of things, particularly healthcare's complex ecosystem, and have given many conference presentations in the past. And, my cancer last year consumed almost a million dollars of healthcare spending.
The next thing I know, in today's email (below), they've changed the TITLE of the session to be consumer oriented, and filled the rest of the panel ... with more VENDORS:
May 6, 2008 Sheryl Stein's info hunt: an e-patient odyssey
Sheryl Stein's e-patient interview was great in its own right, but she struck bonus paydirt when she responded to this question:
You say "So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up..." Where did you do that research? Journal articles, user communities, sites like the Mayo Clinic database?
Her response in the comments is almost as long as the whole original interview, and exemplifies e-patient principles and practices:
being a cautious information user
hunting and hunting, beyond the "usual suspect" sources
speaking about her condition in a peer community
finding information that supplemented what her specialist had in hand
Even today, she speaks up about what would work for her, asking sites (especially public-facing government sites) to put their information in more patient-accessible terms.
As a fellow e-patient who had to research in a hurry, I related to her inability to get the information she needed from conventional well-respected sources - despite the archaic advice still dispensed by sites like CNN's "Empowered Patient" column, as we detailed two months ago. So what did she do? Kept asking, kept looking, found it. That's "e."
Here's to uppity women, in the form of e-patients! Now let's find some e-guys with attitude, too.
e-Patients, alert! Time to participate in creating the lexicon.
Ted Eytan MD is open to suggestions on his definition of Health 2.0 - he'll be giving a talk soon and wouldn't mind some honing, particularly shortening.
Here's the current definition:
Health 2.0 is the transition to personal, participatory health care. Everyone is invited to see what is happening in their own care and in the health care system in general, to add their ideas, and to make it better every day.
I'll be mildly inflammatory here: What, it's a TRANSITION? Like, once we get there, Health 2.0 is over??
*Is* it the transition? Or is it participatory care? Or is it a platform (web 2.0 / the read-write web) that accelerates / fosters participatory care?
Definitions are important, because if people get the wrong idea in their heads, they start rejecting the idea without seeing below the surface. We have enough problems already with people "in the system" who don't want participatory medicine. So let's hammer on this a bit. ...
I'll be in Boston tomorrow for a World Congress Leadership Summit. The organizers certainly use all the right key words to describe the event; I'm kind of hoping the presenters get to wear purple robes or something to match the superlatives.
For health care leaders committed innovative health care delivery system redesign, the 7th Annual Information Therapy (Ix) Conference, “WIxRED: Next-Generation Patient-Centered Care,” is a unique event at the spectacular new Newseum June 12-13 that will be a national dialog on the intersection of HIT and patient-centered care. Unlike the other events during National Health IT Week in DC, this conference will focus engaging consumers in the use of electronic tools and how to actually implement these Ix initiatives.
What other conferences are coming up in the e-patient universe?
Sheryl Stein, known to many as “wrekehavoc,” dispenses her wisdom and humor on a 6,000-member online community of parents (using good old listserve technology) and on her blog. In this third edition of our e-patient interviews, Sheryl talks about the power of community and how "reaching out via the internet is now an ingrained habit in our world." Jump in here...
The California HealthCare Foundation published a report the other day entitled The Wisdom of Patients: Health Care Meets Online Social Media (PDF) which is a nice overview of the current state of Health 2.0. The report is four chapters long: Social Networks Come to Health, What is Health 2.0?, The Business of Social Networks and Health, and What's Next for Social Networks and Health? More inside...
April 23, 2008 E-patients Unite To Document Problems with Generic Drug
For over 30 years at The People's Pharmacy, we have been guided by a respect for people's ability to make informed decisions about their health. We have always welcomed input from consumers, but we had viewed our website as an information dissemination system: we posted articles and readers posted comments. That was the extent of the interactivity. We had never used the site as a beacon of e-patient activity – until now.
E-patients have recently drawn national attention by documenting significant problems with a generic drug - problems that the FDA hadn't caught. ...
