One of my favorite films of all times is called “The Princess Bride”, a sort of “Errol-Flynn-goes-Monty-Python” experience and if you haven’t seen it, I strongly recommend you doing so. One of the film’s villains frequently says “Inconceivable!” and finally his twice-as-large and half-as-smart sidekick interjects: “You use that expression a lot. I don’t think it means what you think it means.”.
In my opinion, the same is true for the expression “patient engagement”, I don’t think it means what you think it means… Let me try to explain.
All over the world, healthcare organisations are desperately trying to engage patients to tell them what it is like to be a patient, to tell them how they (patients) want them (healthcare organisations) to work to best provide the services they (patients) need and want. Don’t get me wrong, this is a good thing! Patients’ experiences are of course extremely valuable to improve the healthcare systems. However, I see a few problems here:
- the use of the word “patient” suggests that the opinions and experiences that the system is interested in only relates to our experiences in the context of healthcare. What people with diseases and health-related problems really want is health, not healthcare. If you ask a person to give their view on healthcare within the setting of healthcare, you will get their views on healthcare, nothing else.
- there is often a large knowledge gap between the person asking the questions and the person responding. Patients often do not have a very good understanding for the complexity of the healthcare system. This means that they will very likely not be able to put their experiences and opinions into the context from which they are asked.
These minor objections however fade in comparison to my main concern with how currently patient engagement is being operationalised. Think about it, all over the world, healthcare organisations are inviting patients to engage in the healthcare structure…. think again…. healthcare organisations are inviting patients to engage in the healthcare structure. We, the patients, are guests at healthcare’s table and, as guests, we are expected to adhere to the prevailing rules (explicit and implicit). Are we really an equal stakeholder? An equal stakeholder with mandates and responsibilities?
Is there really no other way of engaging patients????