Doctors should stay clear of social media!?

Doctors should stay clear of social media!?

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Posted on: 05-24-2012 by: Dr Irwin Lim

By Dr Irwin Lim, Rheumatologist

Less than 2 weeks ago, I was asked to talk to the next generation of Australian rheumatologists about how social media may be relevant to their clinical practice. A strong concern for these doctors was that they would expose themselves to the ire of disgruntled patients, and that they may need to be so careful of what they say to avoid offending others that it would be easier to just avoid the interaction. These were worries I had myself but I still feel and therefore, argued that as physicians, we do have a responsibility to have an online presence to provide our perspective to online health discussions.

Harsh reality was experienced this week.

My colleague and friend, Roberto Russo, who I had talked into contributing a blog post, wrote about a disease called lupus. To my mind, this was quite a benign post and the major point it made was that this disease had broad clinical manifestations and that, at times, patients may present on the basis of their  joint symptoms. A relatively common presentation to a rheumatologist. He made the point that joint symptoms could sometimes be part of a systemic disorder.

What followed was very unexpected. Multiple tweets and then comments on the post by lupus activists and lupus patients suffering with more severe disease. These were in many cases, angry and judgemental, and in some cases, over-the-top. It seemed that a word used, “hysteria”, touched a raw nerve, leading to emotional reply. Unfortunately, I think the context of that word and the rest of the words in the post were given less consideration.

Please read the post followed by the comments to judge for yourself.

I have read and re-read these many times. It makes me a little angry, confused and very sad.

A little anger because those with loud online voices seem happy to shout out softer voices. Confused because some commentators seem to be able to read so much more than I from the same words. Sad because the post has so obviously upset some people, including the author.

I often hear calls from patient advocates that we need more doctors to contribute to the online conversation. It is sad that one of the reasons preventing doctors from doing so is being demonstrated.

Should doctors stay clear of social media?

Many will. And this is a shame.

The advantage of social media is that it allows conversation.

All comments were accepted to the piece. As curator of this blog, I welcome criticism and comment but prefer it to be non-defamatory and less inflammatory.

Surely, we can accept different perspectives than our own. Let’s all contribute constructively to the conversation.

Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.
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  • Noe Olvera, MD

    As a rheumatologist who is also active in Social Media, I mirror Dr. Lim’s feelings. As I read the comments on various blogs and posts, it is clear that patients are looking for answers from each other rather than physicians. Somehow, especially among rheum patients, there is this feeling that their doctor doesn’t understand them or that the doctor doesn’t believe them. I think that once physicians become more active in giving their perspective, patients will better understand their disease and the decisions that their physician makes. I hope that the unfortunate experience that Dr. Russo has had won’t keep him or other physicians from being active in social media.

  • http://www.upstate.edu/biochem/faculty/?empID=westr Bob West

    I had a brief Twitter convo yesterday with Dr. Lim about this topic, which sets the background for my comments further below:

    “@_connectedcare: This post on SLE unexpectedly triggered torrent of criticism. I draw this to attention of #rheumedu Drs & educators. ow.ly/b59MM

    @_connectedcare: @westr Thanks for the RT, Robert. Twas an interesting response.

    @westr: @_connectedcare Interesting and necessary. IMO that was win-win, though possibly painful. ;) ”

    The point I was trying to make to Dr. Lim is that what at first glance appears to be a moral defeat is, in my opinion, exactly the opposite. It’s the CONVERSATION itself that is important, less so than agreement among docs and patients as to how disease is to be defined and treated. I’m NOT saying the latter is not also important, but that improving healthcare in the 21st century and in the new age of social media will not happen automatically and instantaneously, but will exhibit growing pains as both sides (docs and patients) learn more from one another. Hence, my comment that this was “win-win”. Everyone should bear in mind that this “conversation” just got started (not the respective post, but docs and patients using social media to inform), and “Rome wasn’t built in a day”. The value added from the post by Dr. Russo was really that of initial engagement, not “here’s the lesson of the day” (whether intended or not). In summary, I view the discussion arising from this post as completely normal, expected, necessary, and productive for all parties involved*.

    Thank you Dr. Lim and Russo for getting the conversation started, and to the other Rheum docs and patients who were interested enough in improving healthcare to provide comments on Dr Russo’s post!

    *Disclaimer: I do not have SLE, but am familiar with most of the individuals involved in this discussion and fully appreciate their individual perspectives. BTW, I am a #chronicpain patient, so I am particularly sensitive to the patient point of view.

  • http://www.ronankavanagh.ie Ronan Kavanagh

    Although I wasn’t involved in the writing of the original piece or know Dr. Roberto Russo personally, the response to it has affected me deeply.

    As someone who enjoys blogging and online engagement with patient communities, I confess to have been unexpectedly overwhelmed by the tone of (some of) the responses, and anger directed at him. I can fully understand his reluctance to blog again and I’m sure his experience will discourage many other physicians from doing so.

    Its a pity, because however knowledgeable and passionate online patient communities may be, they need (and, for the most part, want) a medical presence online to help them navigate an environment full of misinformation, skewed perspectives and vested interests. Doctors can provide a unique and objective perspective and sound knowledge base that can only be achieved through structured learning and apprenticeship. Those of us who give up our free time to share this valuable information don’t ask for anything in return other than an occasional thank you and a modicum of respect.

    Dr. Russo’s logical and dignified response to criticisms of the blog (and yours) should identify you both as physicians that the online communities could continue to learn a lot from. Keep on blogging. Keep on listening and be proud of your work.

  • http://waters-edge.blogspot.com Dana

    It’s an unfortunate reality that the more you put yourself out there on social media, the more likely you are to run into angry commenters who just can’t be satisfied, no matter what you say. It’s a problem that’s not unique to doctors; businesses face this as well, as do individuals. Patients do tend to be a particularly sensitive population, though, and many of us are used to being (or our disease being) misunderstood and misrepresented. As such, I can see how you may be even more likely to face incendiary comments if someone feels this is being done—even if the author didn’t intend it that way. As you say, it should be an open conversation, a discussion, and there are proper ways to raise questions or criticisms. I hope that doctors will not be dissuaded from joining social media because of this. As a rheumatology patient, I love seeing more and more doctors become active in social media and have been very impressed with the thought-provoking and useful information they put out there.

  • Philip Gardiner

    I would echo these sentiments. As a rheumatologist who has always believed that patients deserve to be given unbiased information I have been quite shocked by the criticism this piece attracted from several patient advocates. I can endorse the comments that in my (European) rheumatology experience mild Lupus is commoner than severe SLE. I believe it is important for us as doctors to make this clear to patients who have just been diagnosed and I actually warn my patients that some of the information on the internet tends to be biased toward the more severe complications. That is not to say we can be complacent, and there is a fine line between reassuring worried patients and making sure that everyone is ready to get into action when more serious problems arise. We certainly do not mean to belittle the experience of patients with severe disease and I didn’t get any sense of that from the article. I sincerely hope Dr Russo and other doctors involved in social media will not be put off from providing information for patients.

  • Tracy

    As a patient who is deeply concerned that the responses to the lupus blog posted by Dr. Russo will make physicians reconsider their use of social media, I wish to re-post the response I initially made to Dr. Russo’s blog (which also echoes much of what Bob West noted in his own response above). Please, please, please do not let this one experience keep you from engaging others through social media. While it may not always seem that way to you, your contributions to patient education are invaluable. Please don’t forget that. Thanks, Tracy
    *****************************
    Original post:

    “I hope Dr. Russo continues blogging. I empathize with his surprise at being a lightning rod for some heated discussion, but as a patient who constantly scours the web to learn more about her own disease (rheumatoid arthritis), I think it is critical that doctors and patients continue to engage in these discussions on the web.
    Through this and other experiences on the web, we (patients and doctors alike) are learning how to better communicate with each other, and no one can possibly overstate the importance of that! Although I do wish that it could always be done in a painless manner for those involved in both the blogging and the commenting.
    Dr. Lim, I also hope BJC keeps this blog open to the public. I have learned so much from this site, even though I am a patient in the U.S. and don’t know any of the contributors personally, and I can’t thank you enough for that.”

  • David O’Reilly

    I do hope that Dr Russo continues to write.
    Perhaps doctors should reveal that we are too are patients. We worry and even panic when we spot something is wrong. Sitting ouside the doctor’s room about to get our scan results can be awful for us as well. Our children get admitted to hospital, our parents and partners too. The medical care we receive can be good or bad. We also feel the small acts of kindness that can make very difficult times a little easier to bear and the occasional thoughtless, hurtful indifference that makes them harder.

  • Julie

    I would strongly encourage our rheums, and other docs, to keep trying to participate in social media. One reason I say this, is because of my own experience with RA and some RA online communities and blogs.

    I have been dismayed with the amount of medical provider bashing, that goes on by some bloggers and then those who comment on that blog. While there are bad doctor experiences , so are there marvelous clinicians out there. One is a rheum who has treated me for 18 years. One blogger I have in mind, is very loudly criticizing of all rheums.and has gone through multiple rheums themselves. I am not sure that is the greatest stance for a RA patient advocate to be using. And while there are some good research writings presented, utilizing well-respected journals, textbooks,and other sources,this anti-rheum drumbeat is very concerning, as it can be destructive to newly diagnosed RAers, and older ones as well. Then, there are other sites that are so wrongly inaccurate, that it is dangerous.

    . I believe the voice of the medical community is vital,to help be a source of correct information. Patients using the internet, is a fact of our modern day world. And I believe it can work out to be a tremendous place for doctors and patients to come together. Better informed patients are more compliant patients,and thus make the doctor /patient relationship more effective.

    So, please, docs, dont give up on social media! To value the voice of the patient is essential for the medical community. On the same token, it is vital for those patients to also hear the voice of the doctor.

  • Jeanette

    Dr Lim,
    I believe it is vitally important to encourage contributions from our Rheumatologists and other health professionals because otherwise we run the very big risk of patients, who think they know more or as much as the doctors advising others, and patients…some of who are extremely vulnerable believing and acting on advice given by other patients rather than medical professionals.

    Like Julie, I am housebound most of the time and spend a fair amount of time on online support communities for RA …but I am realistic and know that doctors go to university for many years and continue in their education well beyond and ultimately are the experts and are who we should be listening to. Also like Julie, I have read forums where it is considered that our doctors dont know what they are talking about…I have now moved away from these type of blogs/forums because I believe they just brings down the patient and is not beneficial for anyone…I trust my doctor and as a long term chronically ill patient that is essential. I dont think there is anything positive to come from a blog or forum that is dominated by negative comments about medical professionals and therefore believe that we need greater involvement from doctors via social media to provide a viable alternative to these destructive forums. So please Dr Russo, Dr Lim and others do continue to provide a presence in social media because, whilst there will always be patients who will try to shout louder than others to be heard…remember those of us who have slightly softer voices who are eager and willing to learn what we can from those who really know.

  • Jeanette

    Can I also say…I believe the use of the word hysteria was taken totally out of context by many commenting on the blog…my understanding was not to trivialise the disease in any way shape or form….but to say that whilst the disease can ultimately be life threatening…this is not always the case…it is possible to have a mild form of the disease so everyone with a diagnosis of Lupus does not need to fear the worst. I dont believe this is meant to undermine those who do indeed have the most severe disease.

  • http://zandbelt.wordpress.com Michiel Zandbelt, MD, PhD, rheumatologist

    What an excellent blog posting (yes this will be an anti-iflammatory response).

    Just like in real life also online there are some people that are just a little too present.

    After all it remains a matter of interaction. In an ideal world It should be aimed at co-creation and learning from one and another rather then a battle for who is right, who has the loudest voice. It’s allright to agree to disagree, but it should not lead to anger or furious replies.

    Meanwhile I don’t have the illusion that people who prefer the loud voice in real life or online could ever be banned out, we’ll just have to live with that and find a way to deal with that.

    Don’t ever hide just because of being vulnerable to offensive responses (everyone is vulnerable and realizing that one is vulnerable isn’t a bad habit, after all nobody is perfect, it’s a pity that some loud voices give the impression they feel they are). Keep blogging and keep interactiing…after all live is all about interaction (and thus communication).

    From co-creation comes creation.

    Speak out (with respect to the person(s) you’re interacting with)..!

  • http://bjcconnectedcare.com Irwin Lim

    I um’d and ah’d before writing this blog post. I was afraid it might generate another volley of angry responses. I went ahead because I needed to vent & I wanted to get the opinions of others.

    Thank you for all your comments. It’s nice to have this conversation.

  • http://kristelgoodspeedcorrea.wordpress.com Kristel Goodspeed-Correa

    I am a patient and a volunteer advocate, who has both a mild form of SLE and severe RA. I think what others found offensive in the previous blog was HOW things were worded and they came across offensively.

    First off..the Blog was entitled as a “Fast Lupus Fact”… Referring to patients of SLE as George Constanza of Seinfeld is a NOT a fact, it is a biased negative opinion that characterized 5 million patients of varying degrees of this disease into a bunch of hysterical, comedic know-it-alls. Can you see how that may have come across negatively? People here in the US are very familiar with George Constanza’s character on the tv show.

    Just as though YOU dont like it when we classify ALL Rheumatologists into one category, we dont like it either.

    All of us are different and handle and cope with our diseases differently too. I can tell you from personal experience that I have had BOTH good and bad Rheumatologists. Sadly, it seems that the bad ones take the limelight because their treatment of their patients cause so much distress that people feel the need to “vent it out”.

    When I was originally diagnosed, I had an awesome Rheumy. Loved him. He was the best. Unfortunately, he moved out of state and his replacement is/was pitiful. I live in a small town and I basically do not have any options as to whom I can see. The replacement Rheumy was pulled OUT OF RETIREMENT to cover my previous Rheumy’s caseload. Needless to say, you can tell he doesnt want to be there. He also doesnt want to treat LUPUS, only the RA. Any time, I would mention anything having to do with the Lupus, he would blatently ignore anything I said. He graduated Medical School in 1972 and I think his mindset is still on what was known THEN vs the current information of 2012.

    As far as testing goes, my good Rheumy kept a way better eye on my bloodwork with more tests than the bad one did. Bad Rheumy barely tests anything at all.

    One of the complaints across the board and from different countries is how everything that we the patients say goes on deaf ears. And if this is the Patient’s experiences, then listen to what we are telling you because this is many people’s reality. Does this mean ALL Rheumys ignore their patients? No. But there are a great deal of your colleagues out there that are.

    Do we the patients try to seek emotional support, information and encouragement from one another? Sure, we do. It is lacking in the Medical Community as a whole, so we have no choice but to . What was failed to be mentioned, however, is that its actually very helpful as a method of coping to know you are not alone when you actively talk with other patients. Often, we learn how certain obstacles were dealt with or tricks that have helped others when certain symptoms have occurred. These are things our own Rheumy neglect to mention because they are too busy rushing us through the visit so they can squeeze as many patients into their office in a day as possible.

    There is good and bad in everything…it all depends on one’s own perspective. Personally, I CHOOSE to think positively and try to make a difference in the lives of others who are much more ill with this disease than I am. I also believe that in thinking positively it helps keep me healthier because in my mind, negativity creates stress and Lupus seems to thrive off stress, often triggering flares.

    Knowledge is power and there is nothing wrong with patients trying to seek out additional sources for information about their own health. Not all Physicians stay up to date – some are better than others, same as some patients are better patients than others. I think as a whole though, I wonder if the Medical Community feels threatened by the patients seeking out additional knowledge??? Otherwise why encourage them to NOT seek it out. Thats my opinion.

  • Joyce DeWitt

    You are always going to hear more from people who have had a severe experience, and therefore have an emotional reaction. I can certainly sympathize with anyone who is suffereing from this terrible disease. However, I do think that the volatile reactions
    to the good doctor’s blog are not at all representative of what the majority of the readers would think. Surely doctors will understand that some of what they write will be subject to criticism. Harsh or inflammatory viewpoints will be from people taking the comments very personally, due to their own unfortunate experiences. This does not mean that other readers would not give credence to the doctor. It’s the same way in other professions. Teachers who might write that they don’t see improvement in most kids who are medicated for ADD or ADHD, would be lambasted by parents who swear by the meds whereas the opposite observation would bring out the anit-med supporters. I hope doctors do not shy away from writing about their areas of expertise. After all, doctors have seen hundreds of cases, read or conferred with other doctors about hundreds more, studied for years, and so their professional findings and observations do have great merit.

  • http://www.carvica1.blogspot.com Carlo

    ” However the extent of the hysteria is generally exaggerated, as in most the disease has mild manifestations that are usually responsive to simple therapeutic interventions.”
    Irwin , I just read this post and commentaries. By the way there are other cases around there with ¨strong inflammatory responses¨ to what some rheumatologists write on line. The post by Dr Russo has a clear point of view and its so frequent that our patients also (I live in South America) are afraid of disease, have a lot of misconceptions (Thinking that Lupus its a cancer its a common one) or read about disease on internet and come to us frequently thinking that they have a fatal disease. Indeed there are severe Lupus cases but as my colleagues are mentioning there are a lot of milder cases in so many patients that would be good to them or to a newly diagnosed patient to also be aware of that outcome. Maybe the use of the word hysteria generated this responses by patients advocates but if we are to have ¨conversations¨ in social media we have to begin to understand each others point of with kind respect. I have learn also lot from this post to my writing and I hope the promise of social media about communities and conversations on line to be true in 2013 and beyond.