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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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18 replies »

  1. 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.

  2. 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, who does nothing else but epilepsy, is reasonably bright, well read and works in a teaching hospital. I will argue that I can not and should not be the primary source of reliable information for my patients about epilepsy (my specialty). I simply do not know enough, about the clinical science, about them as unique individuals, and about their lives. We need to get out of the 20th century view of “expertise” and think about shared experience and expertise. This is what participatory medicine is all about.

  3. 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 solution handled to them, have found a good partial solution, made suddenly possible by the availability of free, internet based communication and knowledge tools.
    it is time for health professionals to embrace this international movement with proven benefits. The e-patients are here to stay and their number will naturally keep on growing, with or without the coordination with their clinicians. If clinicians want to become better doctors they will embrace this evolutionary move from the old patriarchal system of medical care to the model of participatory medicine that has developed organically among millions of people over the last 15 years.

  4. 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.

  5. 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.

  6. 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 up with a Health 2.0 definition so I made mine around that concept rather than the empowerment of the patient (which is a logic offshoot of the change).
    “Health 2.0 is the rapid exchange of individual health information between stakeholders to improve health care experiences and outcomes.” – Ian Furst
    http://www.waittimes.blogspot.com

  7. 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 to (not just the internet). The report is on http://www.pewinternet.org: “Information Searches That Solve Problems.”
    It turns out that 8 in 10 respondents who recently needed health information said they turned to a professional for advice. About half turned to friends and family; 46% turned to the internet. In other words, professionals were the dominant source for people with health questions, which is not what we see in any of the other topics covered in the survey: education, taxes, Medicare/Medicaid, changing job status, or Social Security. For those topics, the internet or a government agency played much more important roles than did professionals.
    I still think the HINTS data is valid (that half of respondents said they’d talk to a doctor about cancer, but only 11% actually did when they needed to). The internet is a very important information source for many people, but for people dealing with pressing decisions, it is a supplement. For people dealing with less acute situations, the internet may take center stage.
    To bring it back to the E-patients paper, Tom wrote about this in Chapter 1 when he cited the classic 2000 report, “Health e-People,” and that report’s division of the market into 3 categories: The Well, The Newly Diagnosed, and The Chronically Ill and Their Caregivers.
    If anyone wants a print version of the paper, btw, I have a stack of bound copies in my office and would be happy to mail them out to the first 10 people who contact me!

  8. 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 for themselves were likely to say they looked online – 46%, vs. 11% who had consulted a health care professional.” – Pew Internet
    Which is not to say there isn’t a group of people who need to be “prescribed” information. But if the Internet has shown us anything, it’s how willing and able people are to research anything on their own. Especially when it comes to questions and concerns about their own health.

  9. 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 of their children as e-Patients. It’s a powerful change in thinking that includes as many resources as possible.

  10. 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 why consumer surveys consistently report that, when asked from where they would most like to get information, consumers’ first choice is their own physicians.
    That’s not at all to say that consumers shouldn’t access information on their own; I certainly do it all the time and I think everybody should do so as much as they want. In fact, one of the reasons why we’re holding this year’s Ix conference at the Newseum is because of how fervently we believe in consumers’ free access to information–thus the link to the celebration of the First Amendment.
    But most consumers would prefer that their clinicians could support them in that process through: pointing them in the right direction; sifting through questions that arise together; putting into context for their particular situations; etc.

  11. 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 patient. When I finished, I had learned the valuable lesson of taking control of my course. I became a player on MY team, not the object of treatment like the proverbial football being tossed from specialist to specialist. I agree that there needs to be change in the system and I believe change must be helped along by patients, family members, and caregivers. In 1996, I was given months to live. I’m here today and I know that is in part to this fundamental change in my approach to MY care.

  12. 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 patient. When I finished, I had learned the valuable lesson of taking control of my course. I became a player on MY team, not the object of treatment like the proverbial football being tossed from specialist to specialist. I agree that there needs to be change in the system and I believe change must be helped along by patients, family members, and caregivers. In 1996, I was given months to live. I’m here today and I know that is in part to this fundamental change in my approach to MY care.

  13. Perhaps I’m missing something, but what’s wrong with how people research health conditions online today? Does everything really need to be “integrated”??

  14. Peter’s point is important because a reluctance of clinicians (and/or systems to support them) to embrace patients’ use of new technologies often leads to “parallel play” in health care–where people end up pursuing two parallel tracks for tackling their personal health. In fact, Susannah’s Pew research demonstrated that–when told by their physicians to stop going online–most consumers either said they’d either switch doctors or “go underground.” In other words, consumers end up using the Web to address their health care needs but don’t talk about it with their clinicians–a recipe for (at best) inefficient care.
    That’s why developing strategies to integrate targeted health information and personal electronic tools into the care delivery process (a.k.a. information therapy or Ix) is so important and has so much potential. That integration of patient-centered care and HIT is the focus of the 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care,” (June 12-13 in Washington, DC) where Susannah and other advocates for e-patients will be presenting.

  15. Until we get E-hospitals and E-diagnosis then there won’t be much “revolutionizing”. How are E-patients going to bring us cost control of any significant value? Even the new non-invasive robot surgeries are not “trickling” down to the consumer as far as less cost.

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