E-patients’ role in Healthcare Social Media: Do Doctors Hate Blogs?
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:
20 Things Not to Say to a Rheumatoid Arthritis Patient
Dear Bridget Duffy from a Rheumatoid Arthritis Patient
20 Tips for Managing Your Rheumatoid Arthritis Treatment
My Impressions on the FDA Hearings on Social Media #FDASM
21 Things to Know about Finding a New Doctor
Subscribe to feed
Don't miss this!
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!
You are not the first person to imagine doctors walking in our shoes. And you won’t be the last.
My only question is what are the docs afraid of? Knowledge is power!
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…
TOUCHE’ ANITA…
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
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.
[...] RT @rawarrior: E-patients’ role in H/care Social Media: Do Doctors Hate Blogs? http://bit.ly/4QxuD9 #hcsm want 2 keep us barefoot & stupid? Should you friend your doctor on Facebook? – [...]
I have to find new adjectives to express how much I love this post!
[...] This post was mentioned on Twitter by Phil Baumann, American Medical New, KentBottles, Ellen S, bacigalupe and others. bacigalupe said: E-patients’ role in H/care Social Media: Do Doctors Hate Blogs? http://bit.ly/4QxuD9 #hcsm (via @PhilBaumann @rawarrior) [...]
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.
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!
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.
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.
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…
Your experience: typical.
Your “bitter” response: so funny.
[...] Article Kelly Young, RA Warrior, 15 January 2010 SHARETHIS.addEntry({ title: "E-patients’ role in Healthcare Social Media: Do Doctors Hate Blogs?", url: "http://articles.icmcc.org/2010/01/16/e-patients%e2%80%99-role-in-healthcare-social-media-do-doctors-hate-blogs/" }); [...]
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! ! !
Your article was most tweeted by Healthcare experts in the Twitterverse…
Come see other top popular articles surfaced by Healthcare experts!…
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.
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.
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.
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.
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…
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.
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
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.
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.