E-patients’ Role in Healthcare Social Media: Do Doctors Hate Blogs? | Rheumatoid Arthritis Warrior

E-patients’ Role in Healthcare Social Media: Do Doctors Hate Blogs?

Should epatients be behind a fence?

Pew finds 61% of patients are e-patients, not content with the back of the bus

Over the last few years, the internet has changed the way that healthcare consumers (patients) interact with providers and manage their own medical care. A Pew survey showed that 61% of patients look online for healthcare information. Sixty percent of them access social media** related to health.  Judging by the response to the recent post about message boards, our readers agree. 

The buzz about how healthcare social media (HCSM) will impact healthcare innovation is getting too loud to ignore. However, there are those who don’t hear it because they have their fingers in their ears. They are saying, “No. Patients belong in the back of the information bus. We will tell you what you need to know.”

When I meet doctors who denigrate the internet, blogging, and e-patients, I usually raise one eyebrow behind my glasses and decline to engage in an argument. It is not worthwhile: someone who already sees patients as less capable of handling information is not going to be influenced by the opinion of a patient.

Do some doctors think that being a patient impairs our thinking?

This week I watched a video about Rheumatoid Arthritis on CRM Healthcare featuring two doctors discussing issues related to RA diagnosis. Dr. Dorothy Sherwood declared, “Keeping them off the internet is a very important thing to do.” I’ve met doctors who hold that view, but never heard one declare it publicly.

Dr. Sherwood’s statement reveals more than a lack of understanding of Web 2.0. It is typical of what patients tell me they receive from doctors: a superior attitude which makes genuine communication difficult. It is as if patients must learn their place, stay in their place, and mind their manners. Of course there are blessed exceptions; however too often, doctors see patients as simple-minded and uneducable because of the sheer fact that they are patients.

Believing that patients are necessarily incapable of reading and processing information is like believing that women are not smart enough to be doctors. I’ll bet she’s glad we don’t do that anymore.  Do some doctors want to keep patients barefoot and stupid?

More symptoms that e-patients’ opinions are not highly respected

A couple of months ago, I was exchanging emails with a manager on a prominent healthcare website. I was asked whether I could recommend a blog. Since the person did not know I had a blog, I recommended my own. Within five minutes, a reply came, “No thank you. We need an expert.” I am not complaining that my blog was not respected: my blog was never considered. In those brief moments, the person did not have time to look over my blog and reject it. My blog was rejected out of hand because it is written by a patient.

Another time, I commented on a post and left a reference to an article on my blog. Within minutes, there was a reply which referred to my blog this way: “It is nice that you found a way to tell your story.” I had not noticed that the person was a doctor until then. Of course, I wished I could correct the misperception that the RA Warrior website was just a “nice way to tell my story.” One of my kids said I ought to have said this: “Was my link broken? You did not get to see my website?”

Want to see how one physician views patients who consult Dr. Google first? Try this doctor’s blog for Time.com. Warning:  it is a little harsh.

E-patients and doctors could be a healthier team

Wouldn’t it be best for both parties if doctors and patients were on the same side? Don’t we share the same goals? I think if God could come to earth to speak to us man to man, then a doctor can have a conversation with a patient, respecting him as a thoughtful human being.

No doctor has the time or the ability to give a patient all of the information that is needed to manage living with Rheumatoid Arthritis or any other disease. No doctor even knows all of the information that is required. It should not be threatening to doctors that people realize this fact.

**Social media refers to websites which allow user participation like blogs or Facebook, etc. This is the second generation of internet and therefore called “Web 2.0.”

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

38 thoughts on “E-patients’ Role in Healthcare Social Media: Do Doctors Hate Blogs?

  • January 15, 2010 at 9:09 am
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    I have learned so much more on the internet and from sites such as this one than I have ever heard from my Dr. I can’t imagine having just that to go on. She doesn’t have the time that I’d need to have her tell me all this. She doesn’t have information that is as up to date (I check the dates on hand-outs). Often times when I bring some thing up that I’ve learned she will agree to it, and it is rather like she just didn’t get around to telling me that. Or she doesn’t have a world full of RA patients (although she is a Specialist for that) to compare notes with.
    So, I learn, and when I go to an appointment, I don’t talk about what I’ve learned on the web. I may well use it to form questions I want to ask, but I never say I learned it on the internet. I know that everything I see isn’t accurate (see yesterday’s topic!) but it is possible to weed those things out.
    I have to figure out how to live with RA, and it is much easier to do with others to chat with and compare notes!
    Drs should be glad that they don’t have to be our RA buddies!

    Reply
    • January 15, 2010 at 4:19 pm
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      You are not the first person to imagine doctors walking in our shoes. And you won’t be the last. :shout:

      Reply
  • January 15, 2010 at 10:15 am
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    My only question is what are the docs afraid of? Knowledge is power!

    Reply
  • January 15, 2010 at 10:24 am
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    KNOWLEDGE IS POWER….AND WHEN WE ARM OURSELVES WITH THAT KNOWLEDGE, IT TAKES AWAY SOME OF THE DOCTORS POWER…WELL, I HAVE RECLAIMED MY POWER THRU WEBSITES SUCH AS THIS…AND FOR THAT I THANK YOU…..MY VOICE WILL BE HEARD…

    Reply
  • January 15, 2010 at 10:43 am
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    Yes, all the parties need to get on the same page.

    I”m definitely all for doctors and nurses getting up to speed on the Web. The Web is becoming an increasingly important part of our daily lives and it simply makes sense that these new media become an integrated part of health care.

    There are, of course, legitimate concerns which doctors have about blogging and tweeting – HIPAA, patient dignity, boundaries, etc. And many doctors are simply reluctant to take the time to understand how the Web works – many also just don’t feel like they have the time.

    Nonetheless, it’s important that they are encouraged to figure out how to engage online safely and effectively. Fear of the unknown is a powerful influence, especially in conservative industries such as healthcare.

    Some doctors will never blog or intelligently embrace social media, while others will learn, adopt and be remarkable at providing safe and beneficial online environments for patients, family members and the general public.

    Great post!

    @PhilBaumann

    Reply
    • January 15, 2010 at 4:26 pm
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      Thanks, Phil.
      Good points.

      No one’s asking doctors to reveal personal information online. Well, I’m not anyway. Haha.

      However, it probably helps to at least get their toes wet in the water of the net. Until a person experiences something first hand, those fears and prejudices will remain. I think they may as well try to change the course of a hurricane as to resist these changes.

      Reply
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  • January 15, 2010 at 1:09 pm
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    I have to find new adjectives to express how much I love this post!

    Reply
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  • January 15, 2010 at 2:52 pm
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    I took the time to watch the full video you linked. Wow. If that woman was my doctor, I’d be looking for a new one! I don’t really understand the attitude that patients need to be kept off the internet. I use the ‘net to order books about RA. I have received very little teaching from doctors, but have learned tons by researching reputable sites. I’ve also made some friends that I’d never have met if it weren’t for blogs and online support groups.

    Reply
  • January 15, 2010 at 3:58 pm
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    i dont think we are getting it, we can read the blogs and news on the net all day long, the doctors are never going to change, they do not work for us, they work for the pharmaceutical companies, why elese when they first tell us we have RA, they start all of us on the very same meds that they do, they start out with meth, then enbrel, then humaira, then on to the next, no two people have the same problems with RA, we are like no two snow flakes are the same, but they are going to treat us the same as long as the doctors work only for the pharmaceutical people and not for us, they are in it for the $$$$$$$$ not the people who need help, we are sheep and have to follow their protocol!

    Reply
  • January 15, 2010 at 7:35 pm
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    Kelly,
    I have to say, in the last 3 years I’ve been pretty fortunate in the doctor department. My problem has been with the office staff! When I asked at check in to see a paper in my file I was told I couldn’t look in my patient file! When trying to get approved for my Simponi – just this morning I was told by an office worker that she didn’t have time to call me back! This is the stuff that sends me over the edge as a patient. Why do people think we are stupid because we are patients?? I don’t get it.

    Reply
    • January 16, 2010 at 10:23 am
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      Krista,
      I can’t talk about office staff. It would be bad for my blood pressure.

      It is sufficient to say: it has been about 10 to 1 negative. And that is saying a lot because I am extremely respectful & cooperative. I’m the kind of person who makes friends w/ strangers in the grocery store…

      When there is a good staff at a doctor’s office, it makes a HUGE difference. I have chosen my current doctors in part because of their staff.

      Reply
  • January 15, 2010 at 9:57 pm
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    Glad to know I am not the only one with office staff issues…I called my rheumatologist office to ask if I could change my medication day because it was making me sick and it was misery to go to work the next day…it took three weeks to call me back!!! I’ve noticed this everywhere though. I think my frustration level has reached a point that I am just plain irritable though. My son needed to see a podiatrist for an ingrown toenail, and the office staff was telling me I had to go with their doctor and let him suffer for TWO MONTHS waiting for an appointment. Well, because of the RA, I have definitely learned the ins and outs of my insurance and I was saying that there were other doctors he could see…I even proved it by looking it up there and then. I got the in your face head snap, and in general was being talked to really slowly…I honestly think the information is guarded more closely by insurance companies and the unfortunate way our healthcare system is set up pretty much guarantees that the insurance company agendas are served rather than what is best for the patient which is why patients are discouraged from gathering information. I think there are fears that there may be a public outcry, a wave of requests for new and expensive medications, or GASP, a movement to further regulate patient care.

    Wow, I just looked back at that and realized that I am not bitter at all. Makes me wonder how far I am from holing up in a cabin in Montana…

    Reply
    • January 16, 2010 at 10:25 am
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      Your experience: typical.
      Your “bitter” response: so funny.

      Reply
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  • January 16, 2010 at 2:11 am
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    I just read your response Robin, and I have to say, you said everything I wish I could have thought of before I made my reply, you hit the proverbal nail on the head! ! !

    Reply
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  • January 16, 2010 at 9:53 am
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    The internet is the only way I found out how RA works against us. No help from the docs… just the medications!
    We need to depend on the internet for the information to keep us up to date.. Understanding and knowledge are so very important to us.

    Reply
  • January 16, 2010 at 9:54 am
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    I dont know of a doctor or specialist who spends or has all day to explain everything to us either. We make better use of THEIR time coming with informed, educated questions. How many times have you saved the valuable appt time because you have already found most of your answers on the web.

    Reply
  • January 17, 2010 at 11:51 am
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    I have done quit a bit of research on RA since I was diagnosed and that is how I have learned as much as I know about it. But you have to be cautious in where you look for information, there is a ton of misinformation, or just someone’s opinion or what works for a friend or relative, out there. I found that out the hard way.
    One of my favorite statements Dr. Sherwood made was that RA patients feel better once we get going in the morning. My first rheumatoligist hated the fact that anyone would get information from any other source than him. I didn’t last very long with him before finding another one. He was one doctor who wanted to keep his patients barefoot and stupid.
    My current rheumatoligist is a good one and knows that I do my own research. Last year when we started discussing changing meds, he gave some literature on 4 meds that he felt would work best for me. He told me to go home and do some research and weigh the pros and cons and come back and discuss it. Ironically we had both selected the same med. He doesn’t have a problem telling me that something is wrong that I have researched and I respect his opinions.
    By the way, thanks for sending a fellow rider to my blog.

    Reply
    • January 17, 2010 at 12:29 pm
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      Actually, I’ve sent several people to your site for various reasons. Just found another motorcycle/ arthrtis guy this a.m., would you believe?!

      We can’t fix the Sherwood’s out there, but I hope we can begin to teach the new generation of docs to wake up & smell the methotrexate. :razzmad:

      Is it okay if I ask… do you think that maybe as a man, you get more respectful treatment from docs? I know you’ve obviously never been on this side, but I’m just wondering…

      Reply
      • January 18, 2010 at 10:36 am
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        I love the statement “wake up & smell the methotrexate”! Her attitude reminds me of my first rheumatoligist.

        Kelly, you bring up a very valid point that I had not even considered, perhaps you hit the nail on the head. It’s also one that shouldn’t be there, you are far more knowledgeable about RA than I will ever be.

        I’m paired up with a girl who has been training 4 months longer than I have. Last Friday, the press shut down and the supervisor came out immediately and started hounding her about the press being down. I heard the tail end of this conversation as they approached where I was. I turned and told him, “Don’t jump on her, this was my fault”. It really wasn’t, but she had told me how he was riding her and how he would always do it away from any witnesses. He put his hands up and said “thats ok, I’m not trying to lay blame here”, turned and went back to his office. We didn’t see him the rest of the day after that.

        Reply
  • January 25, 2010 at 12:48 am
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    This is astounding to me. I have no idea how some doctors are discouraging patients to tell their stories online. Maybe they are afraid the wrong info gone viral or they prefer patients to have professional guidance instead? No matter how, I don’t think forbid patients to tell their stories can be helpful. I think letting an RA patient to share how he/she is running her life as reference is a good idea. Seeing matters in a patient’s perspective can definitely help the doctors to be more aware of what to expect and how they can provide help whenever needed. I agree, e-patients and doctors can definitely work together, just imagine how much they could have helped others and themselves through educative content.

    @wchingya
    Social/Blogging Tracker

    Reply
    • January 25, 2010 at 10:35 am
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      Hopefully, it is only this bad in the US / Canada. I have noticed that doctors who openly interact with this blog are not based in North America. (However, I know of some who read & don’t comment. What do they think?)

      Do all countries have such a class arrangement with doctors & patients? Patients are assumed to be too unintelligent to understand things.

      Reply
  • January 25, 2010 at 12:04 pm
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    I’m not sure too, but mis-communications do happen often no matter where we live in. I have both experiences in meeting a considerate, humble doctor who’s willing to listen and guide; while another never listens, impatient & refuse to explain further when we hope to know more. Maybe we’re not familiar with the medical terms but some of us are willing to learn and be educated, I just hope they know that and try before assuming we are all not interested in knowing the facts.

    With social media nowadays, preventing people to tell stories is impossible. Hopefully there will be the day when both sides are reaching an understanding that people need to be educated; at the same time, a little bit more patience, humbleness and sympathy from one another.

    Too good to be true huh? 🙂 Maybe someday.

    Reply
  • June 29, 2010 at 9:17 am
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    I’m not sure if I’m more mad about the general insults in the article or his comments that ‘nurses are better patients because they are used to following doctors orders!!’ Hello Dr Dark Ages – that is not my experience of nurses. In fact it is a little known fact that when it comes to many things (I’ll just use one example) it is often the nurse that rings the Dr to alert them to the fact that Mrs Smith’s potassium is so low if it’s not fixed now she is likely to awaken on a cloud and playing a harp!! (added for visual purposes only).
    In my humble experience – the general reason many doctors don’t like questions is because they don’t know the answers. In the dark ages – doctors were viewed as gods, and they liked it. Many people still look at them the same way and it strokes their ego (not all but a lot). In Aged Care Nursing where I have worked for the past 17 years or so – there was a huge turnaround in 1997 after a certain Govt Act in Australia called the Aged Care Act. There were many reforms but to me the most significant one involved a legal requirement for patients and if patients wish their families to have an active part in their care. Put easily – gone were the days when the bossy old matron told patients what to do. Since then things have changed – they aren’t perfect but it’s a start. I admire the older nurses who despite being brought up in a system that gave them power – so many have embraced the ‘new way’. Of course there are always exceptions. But essentially nurses do not run round follwing doctors orders – and this little black duck certainly does not, has not and never will. As far as Dr Google is concerned – I just might be your worse nightmare – along with my fellow RA Warriors.
    Apologies for the rant but I could take that dear chap and his supporters down a dark alley and slap them with my knee supports!!

    Reply
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  • October 19, 2010 at 1:19 am
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    “I think if God could come to earth to speak to us man to man, then a doctor can have a conversation with a patient, respecting him as a thoughtful human being.”

    I don’t know if I told you this Kelly, but this is one of my new favorite quotes…

    How do you always do that? You put into words the things that we wish we could say… if we’d only thought of it!

    Reply
  • July 11, 2011 at 9:58 am
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    Dear Kelly,
    I’m sorry you had bad experiences with physicians and other people. I think the only way to protect our patients from inaccurate and missleading information is to collaborate with them, but also educate them on how to judge medical content. You said it, that is a great solution.

    Reply
    • July 11, 2011 at 8:12 pm
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      Thanks for your comment, Carolina.

      Did you listen to the CME video? It’s been a couple of years, but I think the doctor said “We have to keep them (patients) off of the internet.”

      I don’t believe that this discussion is about my experiences. I’m reporting what I heard that doctor and numerous other doctors say. It just seemed like a good question to raise that night when I wrote this post: Do Doctors Hate Blogs? I think the answer is obviously, Some Do. But it was a way to provoke thought and discussion on the matter with a bit of humor or sarcasm. Hopefully, that comes across even though you are on the other side of the world. I have some good friends in your country who I have met through this blog.

      Reply
  • November 28, 2012 at 1:46 pm
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    I cant believe I hadn’t read this article before today. 2 years ago, on my first visit to a new rheumatologist after relocating, my rheumatologist asked me if I was an “E-patient”. At the time, I didn’t know what that meant. This was in response to my statement:
    I had had RA for 5 years, had a one year remission, the symptoms came back with a vengeance. I am a registered nurse, and have some information that I have obtained from the internet. I have to admit, I am a little embarrassed to have been a nurse for almost 2 decades, but have limited knowledge of the disease. My symptoms are similar to what is described on the net, but there are times I can’t even get out of bed. Maybe it’s not RA.”
    I was not questioning him. I had looked up the “gyst” of things when my symptoms began, but thought I had a good understanding of the disease once I brushed up on the pathophysiology of the whole thing. I had not read other patient’s experiences, had not been “SUSPICIOUS” about anything, until just then.
    There were similarities in what I had read, but my RA seemed different than what was desribed on Web MD and Mayo Clinic. It was when rheumatologist #2 indicated that there was something “sinister” going on, that there were “secrets” and a lack of trust between patient and physician, that I felt the need to find out “what is going on”. I left that appointment anxious to get home to start my research. Suddenly, I didn’t trust my health care providers. It was good timing for your blog, which I found about that same time.

    Up until that day, all of the physicians that I had seen, a PCP, a rheumatologist, and an ophthalmologist; had been wonderful. I had met my PCP, when he came to my hospital as a young doctor. Over the years, I had cared for many of his patients, had assisted him in my role as a nursing supervisor. We had a good relationship. As his patient, he was slow to refer me because he lacked knowledge; and not because he was lazy or didn’t care. He was on his way to starting a weight loss clinic. His PCP practice was no longer his focus. (This was before you started your blog, and my only source of information was Mayo Clinic and Web MD. I actually doubted the diagnosis, because although there were similarities in the presentation, the description of the amount of pain was a total “FAIL”.) When I requested a referral, he was not offended.
    My rheumatologist was truly empathetic and kind. He hugged a lot,he nodded empathetically, held my hand, and he performed a lot of procedures, labs, techniques/treatments. He even “wrote off” my co-pays (nice). I totally trusted my health-care team. If they didn’t know what was going on, I honestly felt that they would do whatever I requested, and I felt they listen to me. I actually achieved “remission” for about a year. I finally had my sights on new and different things for my life. Things that I had “put on the back burner”, because of illness were finally within my reach. Things like pursuing a relationship and getting a better job in a new area.
    I relocated to an area that should have given me an “edge”. Relocated to a major university town where I thought the health care would be “top notch”. Sadly mistaken. My RA has been out of control for the last 2 years. I remain hopeful. My new rheumatologist, (I’ve had one appt) seems nice, and he seems to care. We’ll see.
    My point is that there should be transparency as I believe you have mentioned in another of your blogs. When the information is “veiled” when there is secrecy and deception, it drives patients to look elsewhere for information.
    I actually thanked rheumy #2 for mistakenly labeling me as an “E patient”. He let me know that there were other patients out there who were vocal about their life with RA, and who were questioning the current medical literature.

    Reply
  • February 13, 2013 at 1:47 pm
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    i have found my doctor appears to just give me pain killer to help with the pain because my blood tests do not show RA WHEN I requested to see a hopital consultant because my hands and fingers are bcomiing disfigured i have just been sent for more blood tests still awaiting the results. just found your site and amzing to see the information of firt aid has i now have sereval nasty spots on my arms which are infected.

    Reply
  • March 19, 2016 at 11:26 pm
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    Dear medical specialists;
    if you don’t want me to search the Internet, then don’t make me wait 6 weeks to visit a primary care doc and another 11 weeks to see the Rheumatology doc. I work in IT: Search engines are my friend. You don’t want me to check mayo clinic, PT videos, and patient blogs? Then don’t make me wait 4 months to see a doc who can help.4 months of waiting is plenty of time to research.

    ~HDCautism

    Reply

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