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Empowering Patients With Information Technology
Jon Lebkowsky, 23 Nov 07
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Years ago -- pre-Internet -- I had a doctor who became a friend after a few visits, and who respected my intelligence enough to consider my opinions about diagnosis and treatment. When we differed, he would sometimes prescribe according to both opinions, his and mine. Given his receptivity to my input I took it upon myself to do some research before I paid him a visit -- not always that easy before the Internet was easily accessible and full of free medical information.

As almost any of us can attest, it's not always easy to find a physician who'll be this respectful of your role in your own treatment.

Today, I have a massive body of medical knowledge at my disposal online. When I have health issues, I can do quite a bit a research to gain a clear sense of what's going on. Not only do I find a wealth of medical information online; I also see plenty of evidence, however anecdotal, that physicians are completely human and fallible. Despite their experience and training, they make bad calls. They don't have the same investment in our health as we do, and they can only devote so much time to each case.

This makes me think of blogs as opposed to mainstream media. A mainstream journalist devotes a limited amount of time to a story, then moves on to the latest, more "newsworthy" thing. We've seen many cases where citizen journalists continued digging and turned up more about a story presumed dead by mainstream media.

Similarly, a patient taking time to research her own condition online may make a smarter diagnosis than a physician with a twenty minute attention-slot. I don't argue for "citizen medicine," but I'm convinced that patients should be more involved in their treatment. I base this not just on my own past experience, but on lessons I learned from Dr. Tom Ferguson, aka DocTom.

In the '90's, as an early adopter of the Internet and web technology, I got to working with Electronic Freedom Foundation-Austin. Through that I crossed paths from time to time with Tom, who was publisher of a magazine called "Medical Self-Care" and medical editor for the "Whole Earth Catalog." Tom wanted the practice of medicine to be more of a partnership between patients and health professionals. When the mainstreaming of the Internet and other computer networks (e.g. AOL and Prodigy) pointed toward the widespread adoption of the robust online information environment we have today, Tom saw clearly what that could mean for the medical community, and to patients. (And that's everybody, because we all become patients at one time or another.)

Tom did a lot of consulting work. He had a position as Senior Research Fellow for the Pew Internet and American Life project, consulted with the Robert Woods Johnson foundation, served as an Adjunct Associate Professor of Health Informatics at the University of Texas Health Science Center in Houston, was a Senior Associate at Boston's Center for Clinical Computing, and served as adjunct faculty at the University of Arkansas Medical Sciences Center, working on a patient centered quality improvement program at the Myeloma Institute for Research and Therapy. Through all of these activities, Tom was soaking up knowledge and thinking about practices that aligned with his thinking about patient-centered clinical approaches.

In 2004, Tom called and told me he was working on a new project, a white paper about "e-patients," and asked me to help him develop a web site to support the paper's launch. He hoped that together they would catalyze a collaboration that could revolutionize health care, by disrupting the traditional conception of the physician as all-knowing expert in favor of a collaboration and mutual respect between physician and patient.

Tom died in 2006, after a fifteen-year battle with multiple myeloma, and before the white paper was completed. However, he had a group of collaborators, who finished his work and launched the e-patients web site and blog in April 2007.

The White Paper's preface has a good summary of Tom's vision for the e-patients work:

e-Patients are driving a healthcare revolution of major proportions.

The old, Industrial Age paradigm, in which health professionals were viewed as the exclusive source of medical knowledge and wisdom, is gradually giving way to a new, information-age worldview in which patients, family caregivers, and the systems and networks they create are increasingly seen as important healthcare resources. But the emerging world of the e-patient cannot be fully understood and appreciated in the context of pre-Internet medical constructs.

The medical worldview of the 20th century did not recognize the legitimacy of lay medical competence and autonomy. Thus its metrics, research methods, and cultural vocabulary are poorly suited to studying this emerging field. Something akin to a system upgrade in our thinking is needed-a new cultural operating system for healthcare in which e-patients can be recognized as a valuable new type of renewable resource, managing much of their own care, providing care for others, helping professionals improve the quality of their services, and participating in entirely new kinds of clinician-patient collaborations, patient-initiated research, and self-managed care.

Developing, refining, and implementing this new cultural operating system will be one of the principal challenges facing healthcare in the early decades of the 21st century. But difficult as this task may prove to be, it will pay remarkable dividends. For given the recognition and support they deserve, these new medical colleagues can help us find sustainable solutions to many of the seemingly intractable problems that now plague all modern healthcare systems.

At this point, health resources and online communities focused on health issues have been part of the web for many years. Given the availability of these resources, patients can be smarter than ever, and effective in reaching others who share knowledge about their experiences. Getting physicians to acknowledge the patient as a collaborator in her own treatment is another matter, but there are signs of support for the concept, such as the Patient Centered Health Information Technology (PCHIT) initiative, which seeks to increase the adoption of patient-centered information tools that "help consumers organize the key information they need to weigh and understand the implications of their everyday decisions, and facilitate important dialog between clinicians and patients about their care." Such tools range from easy access to one's own personal health records, to email access to physicians, online decision support tools, online prescription refills, and more. There are many case studies that validate the effectiveness of online healthcare tools and communities.

One of Tom's collaborators, Gilles Frydman, founded Association of Cancer Online Resources(ACOR) after his wife Monica was diagnosed with breast cancer. The physician who made Monica's initial diagnosis recommended a full mastectomy with chemotherapy. Before his wife committed to this treatment, Gilles joined an online email list devoted to breast cancer. This led the couple to a physician at Memorial Sloan Kettering Cancer Center, where they learned that their original physician's thinking was outdated.

Monica's cancer was successfully treated with a less traumatic lumpectomy and radiation. Gilles' active membership in the online breast cancer community led him to create ACOR, which has become the largest online community for cancer patients.

Near the end of his life, Tom told me that the "e" in e-patients meant "empowered" – empowered by access to information through technology. InInformation and understanding contribute to an important aspect of health. As the medical sociologist Aaron Antonovsky said, "We are coming to understand health not as the absence of disease, but as the process by which individuals maintain their sense of coherence."

Photo: Dr. Tom Ferguson photographed in February 2006 by Jon Lebkowsky at a meeting of the e-patients group at Cook's Branch Conservancy in Texas.

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I've worked in and around medicine since I graduated in '76 as a clinical chemist (ie highly paid lab rat). There have always been docs who want to collaborate with patients and those with a highly developed god complex. Patients MUST take control of their medical care. If a doctor says something you think is wrong, challenge them. If your doctor won't work with you, dump 'em and move along.

Having said that, there is a real disconnect when it comes to finding good quality medical information on the web. The web can help, but until good sound research is made available to the lay community, then it's going to be hard for folks to determine what is good science and what is total crap. I'm very lucky that my current physician isn't afraid to acknowledge areas where she's weak, do some real time research (the clinic is wireless and every doc has a laptop - AWESOME), and then print out what she finds for me to use. It just doesn't get much better.

If I could wave a magic wand, I'd make doctor only subscription sites open to the public - give us the data to make truly informed decisions about medical care and let the dialog begin.

Posted by: Doug on 25 Nov 07

It is known for some time now that well-informed patients who actively participate in the decision-finding process will adhere better to the therapy or other measures agreed upon. Yet, the internet has, from my point of view as a medical doctor, turned out a major pest when it comes to medical information gathering. There simply is to much half-information growing and spreading that will confuse or straightly lead down a false track which is most difficult to discern for the layman. Experience is that I spent the most time of a visit with an "internet based well-informed patient" weeding out that information and the conclusions (and the agressions, panic and confusion) derived thereoff, all too precious time that then lacks for proper exploration of a patient's problems and the decision-finding (just done it again yesterday's night duty, sigh). Moreover, I find the trust in a doctor's competence and will to help that is another major component in this difficult relationship tends to be severely shaken by incomplete, wrong or lopsided information provided, or by the simple fact that many patients will not be able intellectually to sift out the important bits. On the other hand, once patients faced with a chronical illness manage to gather reliable information, they will soon know more about their illness than I probably ever can, given that they focus on one illness only. If a patient can accept that I may know less, a cooperation can be struck up that leads to most satisfying results for both sides. Thus, any website dedicated to overcoming the problem of jumbled information or to channelling information towards a well-judged conclusion is to be greeted wholeheartedly.

Posted by: Stefanie on 25 Nov 07

Curious:'s About page uses the DocTom quote, "The old, Industrial Age paradigm..." on their (without citation):

Is DocTom's unfinished White Paper available online somewhere for perusal?

Posted by: Jeff Schuler on 28 Nov 07

Jeff, sorry I didn't make it clear in the column - the white paper is at the e-patients web site. Though Tom died before the paper was finished, the e-patients working group - the colleagues and friends who had been working with him - completed it a few months after his death. The complete paper is available as pdf, and there's a wiki version which will hopefully be extended by readers.

Posted by: Jon Lebkowsky on 28 Nov 07

Thanks Jon!
Note that the white paper download link on the e-patients site reads "977MB" instead of "KB"...

Posted by: Jeff Schuler on 29 Nov 07

Good catch, thanks!

Posted by: Jon Lebkowsky on 29 Nov 07



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