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Patient stories are not yours to share

I’ll level with you. I get really nervous when healthcare professionals, not just pharmacists, start describing encounters online they have had with patients in practice.

Maybe I’m too cautious but I feel that patient confidentiality is something that we need to protect with rigour and vigour. I reckon the protection of patient confidentiality is one of the most precious aspects of being a pharmacist.

The inception of the internet and the proliferation of the use of social media by pharmacists and other healthcare professionals has presented some challenges in this area.

There is no doubt that there are considerable benefits to sharing stories about encounters pharmacists have with patients. The internet and the many social media platforms that have come and gone in recent years have allowed us all, myself included, to network with and learn from fellow health professionals. I have met and learned from so many fellow pharmacy professionals over the years but sharing patient stories is the next level beyond simple networking.

If we consider the sharing of patient stories I think there is a myriad of ethical considerations.

For example, if you are reading an account by a fellow pharmacist how do you gauge the quality of the information? I have seen many examples of either extremely naive questions or downright factually incorrect information being shared.

I think if you are a pharmacist or pharmacy technician and you choose to cross that rubicon and describe encounters you have experienced in your own practice you need to remember that these stories are not yours to share. This information belongs to the patient and therefore consent should be gained before putting any details online on any platform.

There is a precedent in medicine for sharing interesting, unique or clinically significant cases. These are known as case reports. I have selected an example of such a case report here. The most important two words in this case report are ‘patient consent’.

Without going through the process of gaining patient consent to share the details of a case you leave the risk of breaching patient confidentiality.

And there is some evidence that this can happen unintentionally or accidentally.

An American study involving the analysis of 271 physicians and nurses found that of blogs that described interactions with individual patients 16.6% included sufficient information for patients to identify their doctors or themselves. Another study described how medical students behaved unprofessionally online. This behaviour included using derogatory terms to describe patients and also involved some breaches in confidentiality.

And this leads me to another point. The tone and intent of the online post have a bearing here. If for example, the pharmacist posts a genuinely useful and unique case, makes some effort to deidentify the patient and fellow pharmacists read the post and reflect on it then again there is an argument for risking not asking for consent.

However, in reality, posting about patients has taken a more sinister turn. And it feels like the mob has mobilised in these cases. I’m talking about the moan.

“x patient came in and was complete B****. Even though I delivered great service they still weren’t happy. And why are they in such a bad mood all the time. For God’s sake cheer up.”

Whilst this quote is completely fictitious it is very typical of those being posted in closed groups on various platforms. In fact, I would say this is quite tame compared to some I have seen recently. The motive behind writing this type of post can only be self-gratification or self-betterment in my view. There is a trend online nowadays towards extremes. Anything less will get no attention and the narcissistic need of the author will likely therefore never be satisfied.

The sinister aspect of this behaviour is the act of the vocal minority acting to normalise such behaviour. After posting a risque story many group members will pile in to support thus further embedding the echo chamber environment norms.

And the naivety is at times quite breathtaking. For example, in the fictitious quote above there is a potential cry for help coming from a patient who is very possibly suffering from mental health issues. It amazes me how many amongst us feel that patients should rock up to the pharmacy or to our clinics in a tip-top mood to engage with us exactly as we wish. People come to see us as pharmacists mostly because they are ill so they should be forgiven for having off days and more than that we should be trying to understand their health-seeking behaviour on each visit.

I’m sorry but no matter how bad a day you are having or how difficult your working environment is as a registered pharmacy professional you have a duty to stand down before going to such extremes.

As pharmacists, we are entering a brave new world of much more dynamic risk. A swashbuckling prescriber centred approach to practise within which we are supposed to be confident to justify our actions in court. But my issue with the risk in the area of sharing cases online is that we may accidentally divulge information without even intending to.

So assuming consent is not gained, which as mentioned I think it very rarely is, then as pharmacists why take the risk of compromising the most precious responsibility bestowed upon us?

I will concede that there is a debate to be had about whether it is ever acceptable to hide the identity of a patient and then discuss their cases online. Personally I think any risk, no matter how small when it comes to the issue of trust, is too much and as described above it is has been found to be quite easy to accidentally give enough details to identify patient or practitioner.

I’ve thought for some time that this behaviour goes on perhaps because a vocal minority of so-called ‘key opinion leaders’ in pharmacy behave in a reckless overconfident way. Unfortunately, their actions give the green light to other potentially less informed colleagues. That said being vocal certainly does not bring with it credibility. A lot of the recklessness in this area I believe is driven by a need for attention. The pressing desire and time-pressured need for adulation in the moment hence the time-consuming process of gaining patient consent is not of interest. By the time consent is acquired the social media moment will have passed.

Finally, I think there is something more fundamental to consider here about whether as health professionals we are really seeking to do good and avoid evil. Do we really always have the patient at the centre of our decision-making process? Some may say that posting a deidentified patient case is a justified risk for the greater good. There are many examples elsewhere in medicine where a positive act can be justified by a negative. One example of many could include the dying patient in severe pain. To relieve the pain the physician must give an opiate dose so high that it causes respiratory depression.

The intent to do good may well be pure but how can it ever be justified to take that risk of a confidentiality breach for the sake of shared learning? My final assertion is that intentions can never be 100% pure if the simple act of gaining patient consent is negated before posting.

And whilst this most complex of ethical areas may well continue to change over time the simple way round any doubt is to simply gain consent form the patient to tell their story.

Because it’s their story to tell not yours.

Johnathan Laird is a pharmacist who tells stories, but only those that he is allowed to tell.


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