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E-patients can and will revolutionize health care

By taking advantage of new online health tools, e-patients and health professionals
now have the ability to create equal partnerships that enable individuals to be equipped, enabled, empowered and engaged in their health and health care decisions.

That was the vision of Dr. Tom Ferguson, who coined the term e-patients and launched e-patients.net in 2006. Ferguson intended to upload his book-length overview of the online health revolution, “E-patients: How They Can Help Us Heal Health Care.” But unfortunately, he died a month later 2006, after losing a fifteen-year battle with multiple myeloma.

Following Ferguson’s death, a group of his friends and colleagues completed the paper and adopted the blog to carry on his work, as well as our own. Each blogger brings a different perspective when commenting on Health 2.0 developments.

We think the “E-patients” paper remains relevant in 2008 (PDF, wiki) and we hope to extend the findings into the future. To that end, we are also working on the creation of the peer-reviewed Journal of Participatory Medicine with the help of Sarah Greene of the New York Times; Bruce Shriver, PhD, of the Liddy Shriver Sarcoma Initiative; and George Lundberg, MD, of Medscape. We welcome your comments and suggestions.

Here’s a rundown of who we are and what we blog about:Dave deBronkart is a cancer survivor and blogger.

Susannah Fox is the principal author of the Pew Internet Project’s survey reports on e-patients and online health.

Gilles Frydman is the founder and president of the Association of Cancer Online Resources (ACOR.org).

Joe
Graedon, MS, and Terry Graedon, PhD, write consumer health books that
deal with drug and alternative therapies, write a syndicated consumer
health newspaper column, and host the syndicated public radio show, The People’s Pharmacy.

Dr. Alan Greene and Cheryl Greene
are co-founders of DrGreene.com. Recognized by the AMA as the pioneer
physician Web site, together they have been providing health
information and a community for parents around the world since 1995.

John Grohol, PsyD, is a pioneer in online mental health and founder of PsychCentral.com.

Dr.
Dan Hoch
is a neurologist based at the Massachusetts General Hospital
and an Assistant Professor at Harvard Medical School. An early
developer of online resources for patients, Dan helped found Braintalk.

Jon
Lebkowsky
is an author and web strategist who went digital when he saw
the social potential of connected computers in the late 1980s. Since
then he’s been involved in online community and social network
development, net.activism, web development, and web strategy.

Dr.
Charlie Smith is the executive associate dean for clinical affairs at
the University of Arkansas for the Medical Sciences and the founder of
eDocAmerica.

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alexSteve @ HealthSphereHealth PointDan HochGilles Frydman Recent comment authors
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alex
Guest
alex

This is really new news to me…
I think I find a good site…
I really want to know more about this topic..
The comments from others are also good..
Thanks
===============
AleX
Arkansas Drug Treatment

Steve @ HealthSphere
Guest

I whole-heartedly agree with Dan – there’s so much more information available on the web than can possibly be known be any one person, as hard as they may try to know it all. And as long as people use reputable sites to discover relevant information, providers should welcome those who want to educate themselves to become full participants in their own care.

Health Point
Guest

hey, the concept of e-patients is really very interesting and i personally think this is going to work.

Dan Hoch
Guest
Dan Hoch

Better late than never I guess. I’d been meaning to read the comments to Susannah’s post for a while now, and time got away from me. Sure enough, there’s a point I’d love to make. All this talk about patients seeking information from their physicians (8 in 10 based on the Pew) misses the mark. Bottom line is that’s a cultural artifact that needs to be corrected. There is no way that doctors can know all that there is to know about the topics central to their practice. I don’t know enough, and I am a sub-sub specialist in epilepsy,… Read more »

Gilles Frydman
Guest

I applaud Josh continued efforts to bring the world of clinicians in line with the real world. It is clear that the system could work better if we always had optimized interactions between the consumers and the health pofessionals hired to provide their expert services. In the real world, e-patients have learned to handle directly an ever growing proportion of their healthcare needs. The system failures have created more and more black holes in the continuum of care that all patients suffering from serious and/or chronic diseases rightly deserve. And, in turn, these patients, Instead of waiting “patiently” for a… Read more »

Jon Lebkowsky
Guest

Re. where people turn for authoritative health information, I don’t doubt that most will speak with a physician, but many are also researching online (and elsewhere) – it’s not either/or. It’s so much better if healthcare professionals acknowledge the patient’s need to do this research and to evolve an understanding of whatever condition or disease is present. The healthcare professional can facilitate this process.
The e-patients group has also talked about the need for data to be more open and accessible. Check out my recent post on Health Commons, for example: http://www.e-patients.net/archives/2008/05/health_commons.html.

Susannah Fox
Guest

Hi Ian,
Thanks so much for the link to your blog — you’re way ahead of me in offering a definition of “Health 2.0” actually. I haven’t written one yet and have just been trying to keep up with everyone else’s (like on this e-patients.net post: http://www.e-patients.net/archives/2008/05/participate_in.html)
The phrase that I’m trying to define (and promulgate) is “participatory medicine” which may turn out to be quite close to “Health 2.0” but without the (dare I say it?) 2007 time stamp of the whole 1.0/2.0 label.

Ian Furst
Guest

Susannah — I think you are defining Health 2.0 much too narrowly. The concept that patients will take advantage of online tools to empower themselves is part of the change but not it’s heart and soul. It’s the ability to share the proprietary database information that’s locked in the silo’s of healthcare over a common framework that is reshaping everything. Until recently, sharing individual information between stakeholders (patient included) was difficult. First we learned to share insurance info (big surprise), then x-rays, then lab results, then EMR’s between hosptials now EMR to PHR. I think Matthew challenged everyone to come… Read more »

Susannah Fox
Guest

John, Josh, I think you’re both right (and I have the data to prove both sides). The Pew Internet Project has been tracking the who, what, where & how of internet health resources, with some extra credit work looking at issues of info credibility, people living with disability or chronic disease, and some other topics. Luckily for me, I have some colleagues who saw a bigger picture and created a survey that asked internet users about a range of problems they may have encountered (not just health) and then asked about all sorts of information sources they may have turned… Read more »

John Grohol
Guest

What people say they want to do versus what they actually do are often two different things: “The Health Information National Trends Survey (HINTS), sponsored by the National Cancer Institute, found a significant disparity between what people say is their preferred source of information about cancer and where they actually go to gather it. In a national survey conducted in 2003, 49% of adults said they would go first to a health care provider if they had a strong need to get information about cancer. In the same survey, however, people who said they had recently looked for cancer information… Read more »

Matthew Holt
Guest

How come when Susannah writes on here she gets lots of comments and I get none! Is she becoming too famous?
🙂

Cheryl Greene
Guest

Josh — I think the thing the e-Patients movement is trying to change is a fundamental attitude shift from “top down medicine” to “a team approach”. Certainly there is a need for information available from the own patient’s physician at the point of service. As you pointed out, there is also a need for information available 24/7 through the Internet and mobile apps. But it’s not just about information. I believe that the e-Patient (empowered in this case) will use all the tools available to navigate the course of his or her healthcare. At DrGreene.com, we find parents acting on-behalf… Read more »

Joshua Seidman
Guest

I completely agree with Cheryl that it was imperative for her to take control of her own care. And thank goodness she did! I have heard Cheryl’s personal story before, and she provides a powerful demonstration of the potential for e-patients to change the course of their own lives. Regarding John’s questions, for some people, online searching works fine. However, many others report that they feel lost in the maze of information spun by the World Wide Web–reporting problems with some combination of: finding the most relevant information for their specific needs; understanding it; remembering it; and/or contextualizing it. That’s… Read more »

Cheryl Greene
Guest

First let me point out that I am part of the e-Patients movement, so what I say will be from that perspective. As a patient myself (Stage 3, Imflammatory Breast Cancer) I got a ringside seat into the healthcare system — too much paperwork, financial incentives in the wrong places, hard-to-find information, botched procedures. Like many, the “treatment” almost killed me. I could see from the inside a lot of things that needed to be changed, but no one, may I repeat, NO ONE, had more at stake than I did. When I began treatment I was the classic compliant… Read more »

Cheryl Greene
Guest

First let me point out that I am part of the e-Patients movement, so what I say will be from that perspective. As a patient myself (Stage 3, Imflammatory Breast Cancer) I got a ringside seat into the healthcare system — too much paperwork, financial incentives in the wrong places, hard-to-find information, botched procedures. Like many, the “treatment” almost killed me. I could see from the inside a lot of things that needed to be changed, but no one, may I repeat, NO ONE, had more at stake than I did. When I began treatment I was the classic compliant… Read more »