Who Are e-Patients? A Simple Explanation

E-patient is a $10 word for a patient who is engaged and participating in treatment decisions. After all, these are our lives and our bodies or our children. To see a great discussion of a successful e-patient in action, please read about ePatient Dave on the e-patient tab on the menu.

An example of why e-patients explore options and engage

moths illluminated by flashI was surprised when I came across this headline: Rheumatoid arthritis patients caught in middle of doctors’ disagreement over hand surgery. So says an interesting group of studies from 2003 which found extreme differences in the ways that doctors viewed treatment for RA hands. For example, the majority of hand surgeons (82%) believe that that joint replacement improves hand function; however, only 34 percent of rheumatologists agree. Differences vary by state as well as by specialty. Some operations are performed 12 times more often in some states than others. Doctors aren’t sure what is best for patients.

“… Americans with rheumatoid arthritis are caught in the middle of a debate among physicians over which treatment – medications or hand surgery – will help their ravaged fingers and wrists most …Rheumatoid arthritis care can vary tremendously depending on where patients live, what type of physician they’re referred to, how much cross-training and interaction those physicians have with others, and what an individual doctor personally thinks of other specialties,’ says Amy Alderman, M.D.”

A simple explanation of why e-patients exist

1) How can a patient know what to do when the doctor might not know?

That hand article made me think, what is a patient to do? How is a patient to know what is best? I remember a time with my daughter when we didn’t know what to do and the doctors didn’t seem to have a clue. She had played tennis for years and she loved it. When she was 13, we went to her pediatrician because of a painful wrist. She was prescribed NSAIDs and rest. At some point, I also bought her a brace for her wrist, but it never got better. She played in pain, trying not to complain.

Over the next year, she saw other doctors in the practice and she was always prescribed NSAIDs and rest. We had a hunch that more needed to be done, but with the HMO, we didn’t know how else to get help. In a system like that, the “primary care provider” is like a gatekeeper who decides what specialty care you need. Eventually, we got assigned a new pediatrician. He had a much different answer: “You need to quit playing tennis and find another sport.” We applied for another primary.

The response of the 3rd doctor was still different. “Young lady, you have a very large ganglion cyst. I’m sending you to the best hand surgeon around.” Shortening the story, the hand surgeon found the cyst to be large and tough. He insisted that it required surgery, but we allowed our then 15 year old daughter to choose a painful attempt of removal by extraction of fluid. That doc was right; he was unable to extract any fluid from the mature cyst. He operated. She got better. She is in college today on a tennis scholarship.

2) We don’t know, but we become engaged to weigh options.

How could several doctors tell us there was nothing wrong with my daughter’s wrist? I don’t know, but I’ve also had a mechanic mistakenly tell me there was nothing wrong with my car. How could I have known what she needed? For a long time, I couldn’t. However, I’m sure that if I’d used the internet back then, I could have researched wrist pain.

How do RA patients know whether they should wear a ring splint to help prevent a swan’s neck deformity or when physical therapy will help? How can a patient determine when partial joint replacement or joint resurfacing or surgical fusion is the best option? This is where the idea of e-patient is involved. It doesn’t matter what you call it, but a patient who needs to find answers will look for them.

When a patient looks for answers himself, he becomes an engaged. E-patients ask neighbors and go to the library, but these days, they most often search online. E-patients visit blogs and forums looking for someone with a similar situation. They search sites like WebMD for articles by doctors. E-patients usually see Dr. Google eventually and may end up reading the same studies that doctors read. What they want is reliable input to answer their questions.

3) As e-patients, we weigh options, hear experts, and choose.

Like the hand study above, I’ve noticed different approaches to many of the problems that RA patients deal with all the time. There are rheumatologists who still practice by the pyramid treatment scheme. There are those who don’t prescribe folic acid with methotrexate. RA docs differ on how soon they change Biologics, whether they prescribe narcotics, and how they diagnose the disease. Patients often have choices about which doctor to believe. I’m glad my daughter didn’t believe the one who said, “Just quit.”

Would you consider yourself an e-patient?

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

18 thoughts on “Who Are e-Patients? A Simple Explanation

  • September 17, 2010 at 9:29 am
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    “When a patient looks for answers himself, he becomes an engaged”
    Probably the most basic of definitions. So many in the dark, worse some trying to define e-patient on their own terms for others and that’s how great movements get choked.

    Reply
  • September 17, 2010 at 10:31 am
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    I believe that joint replacement, when possible, is a wonderful alternitive to medications. Doctors have the tendency to misdiagnose due to younger aged people and any doc with hands on education knows that age holds no barriers!!

    Reply
    • September 17, 2010 at 10:37 am
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      Thanks, Waynette. Good point. How many joint replacements have you had?

      Reply
  • September 17, 2010 at 1:31 pm
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    Awesome example with your daughter of why we need to be engaged as patients! How many times has the right choice been passed by because we didn’t trust our gut feeling and assert ourselves, or do research. It makes me wonder. I did this pre-diagnosis. I could have been diagnosed with RA a year earlier if I would have trusted that feeling and carried through. Another year went by before I finally did assert myself and get the referral to a Rheumatologist. In order to do this I had to confront my primary doctor who reacted with anger and proclaimed I was in perfect health. After my diagnosis with RA I saw him for an infection, he never batted an eye or apologized. I had to let him go.

    Reply
    • September 20, 2010 at 11:15 am
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      It is easier said than done, but that’s our best shot at health / survival. I loved this Ronda, “I had to let him go.” 😀

      Reply
      • December 19, 2010 at 10:24 am
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        I also had to let go my Rhemy. He kept insisting that there were no pain meds more potent than percocet! He also said that i should not have any surgery because it will make more ra in that place! He made me fill out a 3 page questionair each month he made me come in! Goodbye! Now my new Rheumy said that no meds go thru my liver! Why does she lie to me? I read on the note from the pharmacy that they all do! Said my cholesteral med is raising my liver enzimes…i mean what is that?…

        Reply
        • December 19, 2010 at 11:19 am
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          Shocking stuff, Judi. I don’t know what they are thinking. Good thing you can read, I guess.

          Reply
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  • September 18, 2010 at 11:16 am
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    Oh yes total e-patient here.

    And before the internet, I actually spent a year taking Biochemistry and Anatomy and Physiology because I knew the doctors were missing something and I knew if I didn’t figure it out, I would never get any help.

    M

    Reply
  • September 18, 2010 at 3:43 pm
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    It’s vital to be empowered and engaged, as a patient with several chronic illnesses, to get the most out of healthcare and have the best quality of life.

    Reply
  • September 19, 2010 at 7:35 pm
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    No one who reads this blog should question if they are an E-patient.

    We gain information, share information, and learn about RA. We gain a sense of enpowerment about our illness and do not sit in the dark and wonder what is going on.

    Reply
  • September 23, 2010 at 1:30 pm
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    I have a new rheumy fresh out of his residency. He actually commends me for being informed. It is very refreshing, especially after seeing others comments on here.

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    • September 23, 2010 at 10:17 pm
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      Yay! Thanks for the great report! I hope he doesn’t lose that but spreads it around.

      Reply
  • October 6, 2010 at 7:29 am
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    As a newly-declared eDoctor, i.e. one aspiring to meet the ambitions and to see the benefits of the epatient movement, I have some questions and some points, and it seems this is a great place to ask them.

    I’m new at this, and a stranger working in another country, so I may not see things in the same way, nor have the same conditions and challenges, but my views and hopes are for global improvements in healthcare. I believe we should be world citizens hoping for global improvements as much as citizens of our own countries.

    For every sensible, intellingent, engaged, responsible patient I see, I see another who has the same expectations, but who does not accept the responsibility for taking control of their health – two easy examples – the obese snoring patient who could exercise and lose weight, asthmatics who still smoke. Should my approach to each patient type, ‘responsible’ and, for want of a better word, ‘irresponsible’ be the same?

    Second point: hindsight in medicine is 20/20 vision. It is very easy to believe with hindsight from a personal perspective what the better option among many could have been. But from the doctor’s perspective, outcomes are never guaranteed, and results of treatments, surgeries may differ widely in two identical patients. How much of the epatient experience is that very hindsight, and how valuable is it in making decisions moving forward? Do you believe you can get the necessary information to make proactive decisions from the epatient resources alone?

    Third point: Some conditions lend themselves better to the movement, i.e. chronic morbidities like RA and Crohn’s Disease. Handling acute life-threatening conditions like a leaking aortic aneurysm demand immediate, and I suggest forceful, taking of control of the situation by the doctor involved in a manner that would go against many of the points made by epatients. Is this a problem to you? Where do we draw the line?

    I have other questions, but perhaps this is enough to ask for the moment?

    Reply
    • October 6, 2010 at 3:29 pm
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      Welcome Doctor! Hope I can answer your questions.
      1. How to determine that the obese patient is just lazy? Prior to my diagnosis I gain about 20lbs. I hadnt even realized how I had decreased my activity level to minimize my pain. At one point it hit me and I joined the gym. I was there about 10minutes, on the elipitcal machine ( easier on my sore knees). I went home in complete agony. I worked in that pain for 6 weeks before one of the ICU doctors dragged me to the ER. My hip was broke. It was still another year before I was diagnosed with RA.
      2.No one source of information is perfect. If you spend time on the blog and Kelly’s FB page you will see one common theme (here anyway) is helping each other realize that the is no one solution or path with this disease or it’s treatments. However, the more we know the better prepared we are to make those important decisions. It doesnt eliminate the doctor it should enhance the doctor.
      3.Emergency life saving treatment is just that, there is no time. However, once that treatment is done, the follow-up, recovery, and long term dealing with it can benefit from e-patient vigilance. Medicine is always changing and no one person can keep up with all those changes. Patients that have the time, interest, and dedication can focus on their issues and bring new information to the doctors attention.

      Reply
  • December 19, 2010 at 12:53 pm
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    Sorry for venting on ya’ll! I get so frustrated when im getting lied to! Ok wish i could find another out here where i live…Ya’ll take care of yourselves and Merry Christmas to The RA WARRIOR’s….. :present:

    Reply
  • August 24, 2011 at 4:25 pm
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    Definitely! Knowledge is power. That’s how I came upon your site–my doctor wants me to see a rheumatologist because a blood test indicates I might have RA (my mom was just diagnosed with it a few months ago, too), and I want to learn as much as I can before I meet with the specialist.

    Reply

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