10 March 2012

Being a responsible hospital patient on social media



A couple of weeks ago I got into a conversation on Twitter with Natasha Mitchell, host of ABC Radio's Life Matters. Natasha and I met at the Yooralla Media Awards in 2010 - an episode of her previous program, All in the mind took out the best radio broadcast.

She tweeted a link to the Victorian Government's Department of Justice social media policy - which is a really good guide for anyone who works and uses social media. She also previewed the next day's episode of Life Matters which featured Melissa Sweet of Croakey Blog and Debra Cerasa of the Royal College of Nursing Australia discussing the ways doctors and nurses are exchanging information through social media. You can listen to their discussion here.

In summary, the discussion was about the way social media keeps healthcare professionals connected to others in the profession, and stay informed of local and international progress. The Royal College of Nursing uses Facebook to keep nurses informed of events, and to enable groups of nurses to keep connected.

The recent industrial action campaign by nurses has seen a huge social media presence, with messages on Facebook, YouTube, Twitter and on the streets. I've had friends in the healthcare industry post messages of support for nurses, including messages aimed at politicians - in a very responsible and professional way. I believe this professionalism is because of the acceptance that social media is a valid (and instant) form of media, and awareness of social media policies.

Of course, social media in the healthcare industry is also a concern - because people are afraid of privacy and confidentiality of patients. Debra spoke of how the principle of privacy is not different to previous information platforms (such as handwritten notes). She spoke of the regulation of social media use in the healthcare industry to prevent privacy leaks.

Another topic discussed was breaking down the hierarchy between doctors and patients, in the form of a twitter discussion where doctors, patients, researchers and anyone else who is interested in the subject matter can take part.

Natasha posed a question on Twitter and the program about whether hospitals would respond well to negative feedback left by patients via social media. (Barwon Health is one of the healthcare providers leading the way in social media - being open and transparent and also managing risks through the use of their Facebook page.) I responded to her tweet by saying "I attend hospital so much that I am afraid to blog negatively because I need the care of doctors and nurses."

So just as I take care to use social media responsibly by not writing about my work or being seen as representing it online (note the new disclaimer on the side of my blog, on advice from my work's ethics department), I also take care to blog (and tweet and Facebook, and even speak on No Limits) responsibly about the healthcare I receive.

Social media is a great platform to voice opinions - good and bad - about products and services. The case that comes to mind about my voicing my dissatisfaction of a service was when a woman told me to get out of her store because she thought my face would ruin her clothes. I outed her behaviour and store, wrote the facts, posted a photo and received a lot of online support, especially via Twitter and Facebook - including an opportunity to speak on ABC Local Radio in Albury Wodonga about the power of the internet. I guess it was that moment that I realised the power of blogging, and the support it brings. Back then I was quite fresh to blogging, and didn't consider potential legal ramifications of the situation. I actually raised the case with a number of bodies, who couldn't help me, and so my blog was the best platform to promote awareness, and quite frankly, vent. Would I write something again, if a similar event happened? Yes I would, being careful of course.

But I'd never vent my opinions about a bad experience with a hospital or doctor on my blog or social media. That would be a problem for me and the hospital/doctor to sort out privately. Because I need the hospital in my life, and wouldn't want to sully the good relationship I have with them by writing an angry blog or tweet in the heat of the moment.  I believe that just as healthcare staff need to follow social media and privacy policies, patients who use social media need to be similarly responsible.

Of course, I expect that even when a patient does vent angrily about a bad experience, they'll be seen to with the highest level of professionalism - a doctor or nurse is likely to remain impartial. But I wonder whether that doctor or nurse would be worried about the trust in the relationship being breached further, by another online rant?

I write about going to hospital a lot. The last two times I went to emergency I tweeted about how I hate the smokers out the front (and had the Cancer Council tweet back telling me smokers aren't the major culprits of this, it's the tobacco manufacturers...ummmm??). I do vent privately about experiences I've had - but I'd never vent about an actual or perceived negative experience at the hospital on my blog. Not even something trivial. I don't want to risk it. I need that hospital to keep me well. And I'd hate for a staff member to lose their job over something I've written. I put my name to my blog. My dermatology team know I have a blog. I've discussed how to deal with being seen as an 'expert' of my condition online and being approached for support. They have print outs of my articles in my file. 

When I was in hospital last year, one form of entertainment I made for myself (and others) was to take photos of my meals and post them on Facebook - being a keen amateur food photographer. While I wouldn't joke about the taste/quality of the food (the photos told their own story) my friends would, and my Mum joked to me that soon the hospital would be making me buy my own food! I didn't think it was a danger to share my hospital food on social media because everyone knows what hospital food is like!

Blogging is great for writing about the difficulties in life, and gaining support, especially when you or a family member has a chronic illness or disability. I've certainly used it for this purpose, to tell my own story. But in my opinion, a similar level of professionalism and awareness as healthcare staff should be used by patients when writing about the treatment they received. You're not invisible on social media. Even if you blog anonymously or only use your first name, or don't identify the hospital or doctor, you have a presence that will be noticed. By all means, don't gush if there's no need to. And raise your concerns with the hospital, in private.

But don't run the staff down who are doing their job to make you well. Even  if you don't agree with them. Information on social media spreads like wildfire. And reputations are ruined quickly.

Post script: I have a great dermatology team at the Royal Melbourne Hospital. I think we have a good relationship, and I am very open with them about the service I receive. Of course, going to hospital as an in and out-patient comes with its challenges, and I've experienced a few.

What are your thoughts? Should you be using social media to vent about bad healthcare service?

23 comments:

  1. It seems to me that you're saying you would give your hospital or medical staff "a pass," because (1) you need them to be available to you, and (2) you wouldn't want anyone to lose their job because of your blog. But then, shouldn't other businesses get the benefit of "the pass" too? It's kind of a double standard, since you treat different industries with different measures. I don't think I've ever written anything negatively on Facebook about medical professionals, but if I had something to say, I would say it. I have criticized my Town Council and local School Board in local newspapers, but haven't had any adverse consequences from them.

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    1. I can see where you're coming from but I think there is a big difference about airing a grievance online about customer service in a store and service from a healthcare professional (and even teachers).

      I guess the point I'm trying to make is the professionalism and confidentiality when discussing healthcare online should go two ways.

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  2. Thought provoking article indeed.I was a nurse in a public hospital and tried hard to always please my patients but sometimes this just couldnt be achieved no matter what I did.It takes all kinds to make the world go round.I would have hated to be named on social media unfairly.
    Then again I think when someone mistreats another it should be noted and reported.Like you said,to the hospital etc.As a patient I have been treated in a very negative way and was way too scared to say something at the time as I felt extremely vulnerable,so I can see where you are coming from.Mine was during childbirth and so had plenty of witnesses.Had I complained at the time I may have been treated worse by said person.Even the lovely nurses were worried for me.After I came home with bub and all settled matters were dealt with in a considerate and understanding way by the hospital.
    So after being on both sides I definately believe bad treatment should be reported so long as it is legitimate and not out of malice.Would be sad to see someone out of a job unfairly or someone keep a job they do not deserve.

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    1. When I've been in hospital, I hear the way some patients speak to medical staff (nurses especially) and really feel for the staff. And I hope they don't vocalise their frustrations on social media, when from overhearing the situations, the medical staff are just doing their job.

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  3. I expect complete privacy (unless I've given permission for sharing) when it comes to all of my medical treatment. I give the same courtesy to any of my treating medical staff. Even though I'm writing a Tx blog, I'm extremely careful with what I write.

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    1. Yes, privacy and respect should go two ways. I thought it was great that the Barwon Health report in the newspaper link (above) referred to their Facebook page being the source of praise from patients.

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  4. I don't like naming and shaming full stop - on social media or otherwise. But that's just me!

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    1. Good attitude Nikki! I made a decision early on in my blogging journey not to post a negative band/restaurant review - and though I have written about not liking an element of the experience, I have tried to be balanced in my reviews.

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  5. I apply a bit of common sense, manners and real world thinking. If I raise a grievance in the real world I like to think I do so in a calm, rational manner that explains my point of view and the justification for expressing my issue. I always like to provide the opportunity to respond. And I always think abut is this the kind of conversation I would be embarrassed to be having in front of a friend or colleague.

    Having said that, i think you are very wise to tread carefully when it comes to healthcare. I think there are channels other than social media which should be better placed to handle any negative feedback or comments.

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    1. "real world thinking" - a great concept! I think people forget about the real world when doing things online.

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    2. Totally agree, Nikki. Great article, Carly. x

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  6. Good piece Carly.

    I work in policing and find a lot of people criticise or make assumptions about specific actions that police take without knowing the background of a situation.

    People tend to use social media to criticise police about resources are employed when they don't understand the bigger picture. One of the criticisms that gets thrown around a lot is the targeting of jaywalkers, especially in the CBD. What most people don't realise is that six pedestrians a day are seriously injured in the City of Melbourne area alone - the stress this places on emergency services and health resources is immense. Can you imagine if your loved one died because paramedics were tied up treating an idiot who walked in front of a tram texting and with his headphones in, a totally avoidable event? There is only a finite amount of resources to deal with these incidents.

    Other times people will complain about police taking a long time to respond to something relatively minor, such as a noisy party. They might complain because they called twice and it took an hour for the cops to arrive. What they don't know is the van crew has been tied up at a house where dad has beaten mum to a pulp and care is being arranged for the kids or a vehicle collision that has resulted in someone's death occurred and we're having to tell the fsmily. These things will ALWAYS take priority over a noisy party, or fireworks being let off, or even when your car gets broken into and there's no offender there. We understand those things are a big deal to you and you absolutely should be treated with courtesy and concern, but in the bigger picture you are not a priority.

    I absolutely think you have to be careful with criticism and measured in some respect, particularly in those types of areas such as health care, judicial system and policing. No doubt there will be occasions of rudeness and perhaps incompetence but often people ask for the impossible and fail to understand why it can't be done because they don't understand the limits or processes.

    I shake my head when I read some of the comments aimed at police, particularly rude and unfounded ones, because I know whenever something goes wrong for them we'll be the first call they make.

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    1. Thank you so much for this comment Anon. I can't imagine the negativity you cop (excuse the pun) - being in such an open and transparent position in the community means more criticism, I think.

      The police do a great job, and you are right, people are quick to criticise, but also quick when they are in need.

      (PS - after several drinks one night I saw some police on the street and made a suggestion that they should provide an extra community service for women - be armed with flat shoes to hand out to women whose heels are sore after a night on the town! I was really impressed with how well they took my suggestion - met with lots of laughter. I also once asked a policeman if he was a stripper because I didn't think he looked like a real policeman, and he was walking through a wedding venue - he laughed so much at that!

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  7. I loved this Carly. You have to be so careful. I have endured awufl experiences at the hospital, I wrote about one in my recent blog. But I would never, ever name the doctor, the clinic or even the town or type of doctor, simply because I share the same fear as you; that we will not receive the treatment that we need. It makes me sad that we must live in such fear, as though we need to earn the right to live and have quality of life and appropriate treatment. A lot to think about, thankyou xx

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  8. I made a conscious decision when I started blogging not to name my doctors, treating hospitals, or offer medical advice. Part of it comes from being in the health sector pre-sick and the central idea of privacy, but admittedly part of it comes from the fact that for my disorder there are only a handful of doctors in the entire country that treat my condition so privacy is scarce already. My team (cardio, neuro x3 and gastro) know I blog and have often had conversations with their patients about my blog (which I still find weird). For me that increases the need to adhere to the privacy aspect of things. It was never my intention to have my blog become one of the main faces of my disorder, but in many respects you can't ignore the responsibility that comes with that.

    I did have occasion to put in a formal complaint at a hospital 2yrs ago, but handled that privately through professional channels. On my blog I discussed my emotional response to it all but at no time named hospitals or med staff. I guess part of it is that I see my blog as a personal journey more than a medical resource. It is a reflection of my life and journey living with a rare progressive form of my illness, people might get tips just simply from my experiences but that's it. Doesn't help I used to work with 2 of the neuros I now see, simply by fact of there is no one else here who knows my disorder. Occasionally I get private emails asking for referrals to docs, but even then I give all the names I know with no recommendations. Lets face it when it comes to docs, one person's arsehole can be someone else's angel of mercy. And when in my case, you have few to choose from I don't want to scare someone else from getting the care they need.

    Great article Carly and one a few more people to read and think about. Social media has broken down the barriers and I think as a society we are still getting a grip on exactly what that means. The immediacy of our connections and the fact that once out in the ether information/comments etc are essentially there permanently and can have consequences really needs to be considered by all who use social media.

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  9. Interesting. I am a member of the Endometriosis Research Centre discussion group on FB which currently has 800 women. The interesting thing about this group is the small number of world renowned specialists, research scientist and nurses who volunteer their time and experiences. Interestingly, the other day the researcher made a comment that he had learnt more about the impact on women from this group in the short time (it's only been going for a month) than he has from peer-reviewed journals.

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  10. I've had a few bad experiences in hospitals, but not for a long time. Recently when I was really sick I was put in the Clermont hospital for observation for a few hours, and the staff there seemed really lovely! I don't think I'd ever blog, or tweet about a bad experience with a doctor, or a hospital because I don't know their side of the story, and I wouldn't want someone to lose their reputation in the community because I've misconstrued something that they have said or done. I'd take my complaint up with the private channels in the hospital.

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  11. One thing to consider that is specific to a hospital experience and not to, say, a restaurant, is that often the person coming into a hospital is very, very ill and often in a lot of pain. Likewise, family members of the patient see their relative in pain and suffering, and sometimes lash out at staff as a result of perceived neglect or lack of empathy. Pain can cause people to become irrational and belligerent, and can potentially color their experience of everyone they encounter while in the hospital.

    I recall taking a shower after giving birth when I could barely walk and the doctor walked in on me without knocking. Thoughtless, but really, he had just delivered a baby, cleaned and stitched up my underside 12 hours before, so it was just an "oops" moment, where someone else might have been horrified. Another time, I was pregnant with a kidney infection and absolutely miserable. But because I was pregnant, I couldn't have much other than paracetamol/acetominophen for pain while I sat up and cried all night because it hurt too much to lean my back against the bed. The nurses were very sympathetic, but there really wasn't anything they could do except wait for the IV antibiotics to work. How easily that could have turned into a random rant about the uncaring staff at XYZ hospital had it been someone less informed about medicine and its limits.

    On the other hand, after my son was hospitalized for a week with respiratory distress, we very carefully schooled the nurses about the skin issues and how to place an IV without damaging his skin. All was well until one day one nurse came in and over my husband's protests ripped a piece of surgical tape from my 2 month old's foot, taking all the skin with it. Even in this situation, I wouldn't denigrate the entire hospital, but that particular nurse was reamed and I did make the demand that she never come back during our stay. It is one of the many topics I DO plan to blog about, though. (Our blog is just getting started)

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  12. I get such good treatment at hospital I don't think I'd ever need to write about a bad experience! :)

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    1. I do enjoy reading your positive experiences Nikki - sounds like you have a great relationship with your healthcare team!

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  13. Interesting post Carly and something that I embrace both personally and professionally (I work for Barwon Health in the Comms team that runs the organisation social media accounts); seeing feedback as essential to improvement. Have you checked out the new site: http://www.patientopinion.org.au/

    I believe that you can't exist in the social media space as an organisation without a committment to open and transparent communication.

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  14. Hey, nice site you have here! Keep up the excellent work!


    Patient Appointment Scheduling

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  15. What a challenging topic. I hate giving bad feedback. I prefer to focus on the positive feedback so as to reinforce the good behaviour. I've had some yucky hospital experinces too, but was pleased to be able to air them on a formal feedback form, They really appreciated the comments and it helped to justify positive changes in service provision. Sometimes the direct care staff need the evidence from patients to support changes.
    Not always reknown for my tact, I try to be very carefully with social media. I guess we need to ask ourselves how would we best like to be treated. Maliciousness is ugly and divisive, in any forum.

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