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Using Twitter to assess patient takes on patient experience

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A qualitative study of Twitter hashtags revealed power hierarchies can damage the patient experience and clinician relationship.

In an analysis of a popular Twitter hashtag, researchers found that patients largely take umbrage when they feel their doctor does not believe their ailment or knowledge about their healthcare, and when they perceive a power hierarchy between themselves and their clinician.

Although not as many patients are using Twitter to get peer feedback on certain providers (the Binary Fountain poll showed only 21% of patients do this), the social media website still holds a lot of power, researchers from the University of California system explained. Twitter is a large platform that hosts social discourse. Healthcare professionals use Twitter to disseminate public health and patient education messages and to network, while 61% of patients use Twitter to learn more about their health, as well.

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Source: Patient Engagement HIT, 29 October 2020

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Hi @Clive Flashman.  I suspect many of us, when told not to look up an ailment online, do the exact opposite.  The availability of information has changed in our lifetimes beyond all recognition.  However, the quality of that information has also changed.  Previously there were limited number of experts and now we have sources at our fingertips.  The danger is with misinformation and an inability to know what is correct and what is not.  The vaxxer/anti-vaxxer argument is perhaps a prime example or the use of bleach and other products to combat Covid-19.  

However, I think patient involvement in their own care is vital and if patients can't learn about illnesses etc. themselves, it is beholden on the clinicians to get them to a level of informed consent.  I had a good experience recently where the doctor listened to my own ideas about how to deal with an issue and agreed it was sensible.

The challenge will be to know what information is accurate and for clinicians to integrate that into discussions that are now done remotely in many cases and in time poor situations.

I'd suggest that social media platforms are not the best place for an unbiased view on life and death matters though.  There are plenty of websites that specialise in quality medical content that might be better choices for peer reviewed insights.

Final thought, clinicians today are generally more friendly and open to discussion than in my younger days.  The 'consultant is god' model seems to have gone but we're clearly not providing some patients with the darned good listening to that they need. 

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Thanks @Richard Jones

I was doing sentiment analysis on Tweets about 5-6 years ago for a client in the USA. It became evident that people were much more willing to make the effort to post a negative review than they were a positive one. This can of course skew the overall conclusions massively.

I am reminded of my sadly departed friend, Michael Seres, who when he wasn't getting the support he needed from clinicians here in the UK, published his test results online via Twitter and received advice from clinicians from all over the world. It completely changed the way his condition was managed. 

There is always this tension between gaining appropriate context about a patient, and the need for privacy - this is something that has to be decided on a case by case basis.

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