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The world is catching up with us!

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Lisa Salberg Find out more about Lisa Salberg
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  • The world is catching up with us!

    THEY ARE FINALLY GETTING IT!
    --------------------------------------------------------------------------------


    "E-Patients" Challenge Subordinate Role in Medical Care System


    Cathy Tokarski

    Medscape Medical News 2004. © 2004 Medscape

    May 21, 2004 — Even though half of adults in the U.S. say they have looked for health information on the Internet, clinicians continue to underestimate the benefits and overstate the risks of online health resources, a new study finds.

    A fundamental reason why physicians do not encourage their patients to consult an online resource about an illness or medical condition is the subordinate role the health system continues to assign to responsible, motivated patients, according to study author Tom Ferguson, MD, senior research fellow at the Pew Internet and American Life Project. Contrary to what most physicians have been taught, "the universe doesn't rotate around the physician, but the patient," Dr. Ferguson told Medscape in an interview. "The whole mode of thinking that we've all been trained in [as physicians] does not admit room for that."

    But "e-patients," or those who seek online guidance or information about their condition, as well as friends and family members who conduct research on their behalf, are slowly but steadily changing the standards by which healthcare access and quality are judged, according to Dr. Ferguson. His editorial on the impact of e-patients appears in the May 15 issue of the British Medical Journal. The issue is devoted to e-health, and it envisions a healthcare system that uses communication and information technologies to enhance patient care.

    In addition to e-patients' pursuit of online information, which they describe as often more complete than what they receive from clinicians, e-patients also use online support groups for "emotional support, guidance, health information, and medical referrals for nearly all medical conditions — around the world, 24 hours a day and seven days a week, for free," Dr. Ferguson writes. "For the sickest patients and those with rare diseases, online support groups can sometimes be more important resources than physicians for many aspects of medical care."

    One support group for patients with gastrointestinal tumors, called the Life Raft Group (www.liferaftgroup.org), conducts patient-initiated clinical research and has a science team that includes an oncologist, a microbiologist, and a virologist, all of whom are either patients or family members, according to the editorial.

    E-patients are beginning to take note of the "net friendliness" of clinicians and healthcare organizations as an important aspect of healthcare quality, the editorial notes. "Net friendly clinicians support their e-patients' new abilities, encourage them to share the results of their online research, and communicate with them by email."

    Supporting patients' quest to learn as much as they can about their health condition should be a guiding principle, not the exception, to quality care, said Dr. Ferguson. "We have a professional construct of what constitutes healthcare quality that often does not gibe — and is often diametrically opposed — to what patients think is healthcare quality," he said.

    Health researchers must begin to appreciate the transforming effect that e-patients are beginning to have on medical care and to work more aggressively to build that awareness, the editorial advises. "A number of insightful studies of the emerging culture of e-patients have been published, mostly in the social science literature. But they are rarely cited in mainstream medical journals, and their conclusions are unknown to most clinicians," Dr. Ferguson writes.

    Finally, according to the editorial, the entire health system is in need of a "major system upgrade in our thinking" in order to recognize the legitimacy of e-patients, and to involve them in the management of their healthcare and in collaborations between patients and healthcare professionals.

    Clinicians could take the first step toward this goal by "paying attention to their own patients and their use of the Internet," Dr. Ferguson said. Ask them about what they have learned in their online research and what kind of experiences they have had or heard about from friends or family members, he said. "They may know things that are helpful in treating your [other] patients. The level of knowledge may be narrow, but it is deep and "quite amazing," he said.

    BMJ. 2004;328:1148-1149

    Reviewed by Gary D. Vogin, MD
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: The world is catching up with us!

    Lisa,
    I applaud your enthusiasm. It is a giant step forward. It is a first step, but that is always the hardest. There’s a long, long road yet to travel before the masses of physicians begin to realize there is much benefit in an educated patient body.

    However the fact remains, the better educated the patient, the better (and safer) his care will be. He will demand it. So let’s all raise a cheer, - then go back to learning and working to forward our health goals.

    Thanks for the posting.
    Burt

    Comment


    • #3
      Re: The world is catching up with us!

      Yes it is true the more we educate the patient the more lives we will save My neice if more educated may have still been here and hopefully her daughter will be more educated and live a long and happy life

      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

      Comment


      • #4
        Re: The world is catching up with us!

        Nice find Lisa!
        I bet this concept is frightening alot of Doctors, especially cardiologists.
        Fx

        Comment


        • #5
          Re: The world is catching up with us!

          I have found over the years a really good worker is not afraid of learning something new, in fact they tend to be drawn to people who know a lot – the more the better. It is the frightened, ill-trained and/or incompetent who are afraid of being discovered to be unqualified, and consequently build fortresses to hide in.

          I have three doctors whom I find to be exceptionally skilled, and they each are open to discuss things with me, listen closely to my observations and suggestions, - and appreciate the opportunity of working in consort with me regarding my medical care.

          I think if we all search out the best doctors, and don’t settle for, or patronize those less qualified, the medical profession will very soon have a great awakening. At least the good ones will, and the others will either ‘shape up or ship out’. At least that’s my fervent desire. Great doctors and educated patients.
          Burt

          Comment


          • #6
            Too many people against me researching.

            Hi all, and thank you for the oportunity to become part of this wonderful family. What an interesting article that was! Well, I'd like to add my two cents to what others have said so, here it goes. When I first learned of my present condition, I didn't really know who to turn to for I didn't want to bore people to tears with all this, and as well as that, not everybody is interested in the subject which only makes it even harder. All they can say is that they're sorry about it, tell you not to worry, you know, the usual stuff one says when wanting to comfort you. My mum for instance, hasn't been very helpful the few times I've tried to bring up the subject of my illness since she's the sort who thinks that talking about it can only make matters worse. My husband was the only one who could help me there, and he did. Due to very serious and complex eye problem, I had never even tried to deal with a computer before February of this year so, I had to rely on Robert to help me out there. At first he was against me getting too involved because he feared I might worry myself sick with what I would learn on the net. I then managed to convince him that I don't really agree that ignorance is blis and insisted on him finding out about sites on heart issues as well as teaching me how to work a computer which he eventually agreed to do. I've been a member of other sites as well as this one, and I couldn't imagine my life without the great support I've been getting from the members. I was going to write my whole story here but then I remembered that you can go to my profile and view my Home Page where I've explained into detail how it all started. I also have a photo album available on yahoo and anybody who wants to take a look will be welcome. I still have to update it though.
            Regarding the topic on the article above, well, my cardio doesn't oppose to me joining these support groups or researching the internet, but I don't really think he really agrees either for he never shows any interest for what I've learned. I think he might just be being cautious and of course, vanity must play a part in it too. Thanks for reading.

            Débora from Brazil
            http://uk.geocities.com/deboraginastewart1
            http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
            View my heart history too.

            Comment


            • #7
              Re: The world is catching up with us!

              Debora, Welcome and thank you for sharing your story. Your country has more than one doctor who has stopped by to visit Lisa and I at the HCMA Booth at the Cardiology Conferences we participate in. Those who visit us really want the very best for their patients and are anxious to learn. They gratefully take our web info to pass on to patients and offer their services to us with language barriers if appropriate. There are so many good docs out there! The trick is finding the one that's right for each individual. Linda

              Comment


              • #8
                Re: The world is catching up with us!

                I am fortunate enough to have two local cardiologist that respect my knowledge of the disease. (I probably been reading about it longer than they are doctors, in fact I know I have been)

                They also respect the fact I know myself better than they do. They also do not suffer from ego syndrome.... In fact they were glad I joined this group.

                Sometimes we can learn to much as patients, then again not enough. Thanks for sharing this with us Lisa.

                Comment


                • #9
                  Brazilian doctors

                  Hi Linda and sorry for taking so long to reply. You see, I'm just not getting any emails notifying me that someone has posted on threads I've subscribed to, I wonder why. Anyway, can you tell me the names of these Brazilian doctors whom you have mentioned? Just out of curiosity. Thanks.

                  Débora
                  http://uk.geocities.com/deboraginastewart1
                  http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
                  View my heart history too.

                  Comment


                  • #10
                    Re: The world is catching up with us!

                    Sorry Debora, I don't have that info. We keep records in the New Jersey office of all who visit our booth at the conferences. That gets them in our communications file and we can send out updates to them on the latest info. Lisa and the HCMA are in NJ and I live in Maryland, a little more than 200 miles distance between us. That limits my help to Lisa and the office. Lisa has a memory like a sponge - she never forgets a thing! She remembers faces, names, dates, histories, you name it, she remembers it. I'm horrible with names, but I do remember faces. Anyway, my point in mentioning doctors from other countries was to let everyone know how far-reaching we have become. The news is getting out there and people are coming to us, worldwide. I doubt that Lisa has time to be amazed with her own accomplishments anymore. It's nice to see how many others understand and appreciate all she has done.

                    As to notification of response to your postings, I'm going to rely on Tim, Lisa, or Sarah,(or anyone else who might know the answer). I thought you got notification of private messages but not responses to threads on the message board. Tim, what's the real answer here? And Tim(and anyone else who helped) - thanks for all your help yesterday with the website. It seems as though there were a few problems for a while. Linda

                    Comment


                    • #11
                      Re: The world is catching up with us!

                      If you click the box at the bottom of the box where you type your posts to a thread that says, "Notify me when a reply is posted." you will get the notifications. This is on the reply page, between the box you type in and the "preview" and "submit" buttons. Hope this helps.

                      Reenie
                      Reenie

                      ****************
                      Husband has HCM.
                      3 kids - ages 23, 21, & 19. All presently clear of HCM.

                      Comment


                      • #12
                        I'll give it a try

                        Linda Thanks for the information. The more I post in here, the better I get to know the members. Lisa seems to be a great person and very dedicated too. By the way, Linda in Portuguese means "beautiful", did you know that?

                        Reenie When I registered here, I was given the option to get notified automatically, and I chose it. Maybe I didn't understand that I had to do it every time I posted in one of the threads. By the way, do I need to choose that option whenever I write something, or just once when it's done in the same place? Thanks, I'll give it a try and see if it works.
                        http://uk.geocities.com/deboraginastewart1
                        http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
                        View my heart history too.

                        Comment


                        • #13
                          Re: The world is catching up with us!

                          Debora, I'm sorry but I don't know the answers to your questions. Hopefully Tim will see this and answer you. I hope you continue to get to know us.

                          Reenie
                          Reenie

                          ****************
                          Husband has HCM.
                          3 kids - ages 23, 21, & 19. All presently clear of HCM.

                          Comment

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