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????
As you quoted Cristin in a previous post: “So many organizations engage patients based more on tokenism than on a wish to take advantage of the true talent of patients.” It looks good, it sounds good, it smells good to have a patient representative at the table, whether or not such patients are actually able to contribute meaningfully to a pre-set agenda. But merely to include a bunch of patients at the table in order to check off a tickbox as part of a PR-fuelled “patient engagement” strategy to please stakeholders is problematic.
Some might argue: well, at least we’re at the table, and that’s a start. A number of health care conferences subscribe to the philosophy of “Patients Included” (Medicine X at Stanford, Health 2.0, etc) and specifically set out to include patients in the room, on the stage and at the microphones. I look forward to the day when we look back at health care conferences filled only with health care providers and administrators and shake our heads in disbelief that no patients were included way back then.
One of my favourite examples of such glaring omission is a recent U.S. medical panel on breast reconstructive surgery following mastectomy – with not one single patient invited to present. NOT. ONE. PATIENT.
Thank you Carolyn for your comment (and please forgive me for not responding sooner). The examples you mention are very interesting and relevant, both the good examples and the bad one, and I completely agree with your hope for the future. Do you have any idea of a way to accelerate the process?
You’re right Sarah, INviting patients. I think it was Don Berwick who said we ought to act as guests in the lives of our patients. Just wrote a blog on my perpective of what’s needed, aligns strongly with your believes. http://www.linkedin.com/today/post/article/20130614115335-19886490-why-we-have-a-pair-of-ears?trk=mp-details-rr-rmpost
Lucien, thank you for your comment!And of course you are right, I really like your blog post. I will ask you the same question I asked Carolyn: Do you have any idea on how we can accelerate the process towards authentic patient engagement?