What is an e-patient? Who created the phrase?Published in March of 1996, Health Online: How to Find Health Information, Support Groups, and Self-Help Communities in Cyberspace, first used the term e-patient. The author, Tom Ferguson, was a physician and visionary. Ferguson researched and wrote about empowering patients for many years. His definition of e-patient: a medical consumer who is “equipped, empowered and engaged” in his or her own health care. Ferguson argued that the evolution of e-patients are part of what Thomas Kuhn in 1962 described as a “paradigm shift” that’s happening in medical care. The response that e-patients have seen among physicians is part of this shift. Kuhn describes it as a “series of peaceful interludes punctuated by intellectually violent revolutions” as “one conceptual world view…[is] replaced by another.” Now e-patients include those who use the Internet. At this point, the Internet is a primary resource for smart patients. The Pew Center’s surveys have found that 85% of U.S. adults use the Internet (May 2013 survey). Of those users, 72% say they looked online for health information within the past year.
Who are Smart Patients?
Characteristics of Smart Patients1) First, smart patients are health literate. “Learning was a slow process at first. Some of the resources I use are technical so I used to have to look up definitions often. To learn more about anatomy I volunteer as a “model” patient for [medical] students,” says Annette McKinnon, AnneMarie Ciccarella, another blogger and social media maven, also believes it is important to be informed. “I am just one of many patients to any of my doctors. I am mindful of the little nuances that might guide my treatment in a slightly different fashion than a similarly diagnosed patient.” 2) Second, smart patients are proactive in looking for information and trying to learn. Annette describes her process with the Internet, “Gradually I learned to choose sites with credibility. It helped at first that I was in a Yahoo health group where the moderator was an enthusiastic researcher and found good links to answer any question that members had.” For AnneMarie, the Internet has been life saving. “I am constantly on the Internet seeking health information. Today, it’s to stay on top of the latest research but in 2006, it was personal. It took four months from my suspicious mammogram to a definitive diagnosis of invasive cancer and then, another two months before I had my surgery…. I was terrified and I wanted to make the best possible choices.” 3) Third, smart patients prepare and make the most of appointments with physicians. Smart patients prepare for their doctor appointments. “I keep a small ongoing list of things I want to cover at appointments and I prioritize it ruthlessly. If I didn’t, I might miss getting a prescription renewal or blood test requisition,” Annette relates. AnneMarie agrees, “I try to gather as much information as I can in advance of the appointment. I prepare a list of questions.” She has opted to use Medivizor’s free service. “Now that Medivizor has a profile of my unique medical situation, I spend much less time searching for the information I need to have a meaningful visit. It’s all in my Medivizor account and I can make my “things to discuss” list from what I’ve been sent.” 4) Smart patients share the information that they have learned, sometimes with their doctors, often online and with family and friends. AnneMarie believes that she is fortunate. “Each one of my doctors has always been respectful of my questions and encouraged me to be an engaged member of my treatment team. “ In that capacity she has been able to influence her treatment. “I recall asking my oncologist about testing my tumor tissue because I had “accidentally” found information about the Onco-Dx test. It wasn’t included in the ASCO guidelines until the following year and it was one more year before its use was incorporated into the NCCN guidelines.” Her vigilance has also helped her mother. “My mom and I have the same oncologist and at one of her recent appointments, he was outlining a treatment protocol. I knew one of the medications could have an impact on her kidney. When I asked if that might pose a problem, he thanked me for reminding him about her kidney issue and switched to a different medication.” For Annette, information sharing occurs on social media. “When I share information it is most often in online groups and communities and on Twitter or through my blog. It took a long time to learn what I know and sharing it may help other patients.”
E-patient versus Smart PatientOften these two phrases are used interchangeably. Yet are they the same? AnneMarie doesn’t think so, “Not all e-patients are necessarily smart patients. Just like the term patient advocate has come to mean many things, likewise with the term e-patient. It’s an umbrella term.” Annette has a different perspective. “When I think of e-patients I think of high health literacy patients who would often search for information about their condition(s) and the implications of symptoms. They are highly engaged with their health and expect to be involved in decisions about it. They also want access to their data and they use it and study the changes. They look for clues to further research and study. “ What do you think? Do you think that there is a difference between e-patients and smart patients?
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