Professionals should engage with patients on social media

Johnathan Laird

ONE of the things we, as professionals, sometimes do not do well enough is actively listening. We are generally experts at sifting the research. I for one quite enjoy reading newly published research and then attempting to work out how it may influence or inform practice for a particular disorder in the future.

However, we must not forget patients in the midst of all this information. How we communicate and interact with patients is critical in our attempts to care for them. Traditionally, as professionals, we would have had to meet patients face-to-face to better understand how they perceive their own disease.

Not anymore. Recently I was interested to know a little bit more about myalgic encephalomyelitis (ME) so headed for Facebook and engaged with some of the active ME groups on there. To be honest, before engaging with these patients all I knew about ME was that it was a chronic disorder that caused chronic fatigue. With this in mind I published this article in one of these groups: ME – an underdiagnosed and often misunderstood chronic disease.

I then asked the following question:

“I am interested as a pharmacist to know a little bit more about his disorder from the patient perspective. Is there anything simple for example that a community pharmacist like me could do to better support his patient group?”

I was pleased to receive a number of the responses. I suppose this is a form of qualitative research. I really enjoyed the honesty and knowledgeable nature of the replies. They included the following:

“Don’t look at us like we’re insane or making it up. It might not be obvious that we’re ill but this stupid illness is ruining my life”

“Listen to us about symptoms and not just fob us off”

“I would think that explaining possible side effects and advising on dosage of medications would be particularly helpful as ME/CSF patients are particularly sensitive. Well done for wanting to understand more”

“How lovely that you’ve taken the time to ask. I think you sound caring and open to hearing other people’s experiences and that already makes you a step ahead of some professionals. I think it is always good to know that a person believes this illness is not a mental health problem, and that it is a physical one affecting many of our different body systems. If you can convey that you’re onto a winner”

“Get the basics right. Smile and say hi. Listen respectfully. Thank you for caring”

“If you’ve got a consultation room or somewhere quiet to talk, take us there so we can focus more on what you are saying. Be ready to answer questions, even if they may seem dumb. Recommend the pre-payment cards to people you know have a lot of prescriptions”

“Good on you for taking an interest!”

“It would be good to have a list of the medications that some who have the diagnosis, tend to react to. For those who have POTS, OH, adrenal related problems, then some of the medications that affect heart rate and blood pressure might be a problem. For example, some people don’t react well to nasal sprays or decongestant tablets with pseudoephedrine in them”

“Get booklets on our conditions in chemist like they do for m/s etc”

“What a great post. Read your wall. Don’t ever lose your passion and enthusiasm as an entrepreneur. Perhaps advise on the drug interactions with supplements, which a lot of pts with ME take. Also bc of our intolerances/sensitivities, advise on the binders and fillers used in prescribed meds. Far out, but advice on which detox pathways are used by the liver to metabolise prescribed drugs. Detox pathways are sometimes compromised in ME. Thank you and good luck in your career”

I then replied to the comments made as follows:

“Wow! I just cannot believe the response here. You have no idea how useful this information is. I was not aware of the intricacies of the illness, but leave this post much better informed. I am also impressed by the knowledge on show here. It is very interesting that getting the basics right is a recurring theme.

“Saying hello to folk is so simple but most important. I thank you all for taking a few moments to share your experiences. I am inspired now to have a go at writing a blog about ME (or at least attempting to!) based on some of the points you make. Why on earth are we as professionals not actively listening to patients like you guys in groups like this? I hope a blog might address this in some small way and share some of this advice with other professionals. Thank you. Johnathan.”

I learned a number of things here. I was cautious in terms of engaging with patients online, but as long as all you are trying to do is better understand the illness then, in my view, there benefits for both professionals and patients. I think sometimes, the most informed people about an illness are those that actually suffer it day-to-day.

Whether you spend time on social networks or not, I think there must be recognition that this is where many patients now reside. Social networking by patients has many functions, only some of which I have described.

If patients are online then perhaps as professionals we should be too.

Johnathan Laird is a community pharmacist independent prescriber with a special interest in asthma. He is based in based in Aberdeen.

Follow Johnathan @JohnathanLaird

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Further reading
NHS Choices: Chronic Fatigue syndrome