Being an engaged and knowledgeable patient has a lot of benefits. On a personal level, knowing as much as I possibly can about my condition, about symptoms, medications, side effects, treatments, research and more, gives me more control of the situation, increases my possibilities to keep the progression of the disease at bay or at least keep up with it.
On another level, it can give me the chance to make this world just a little bit better. A few years ago I decided to make an effort to combine my experiences of being a patient with a chronic condition and my engineering knowledge in a more concrete and explicit way. To make a long story short, one thing lead to another and I am now in a position where I can hope to be able to influence the way patients are regarded in healthcare as well as in the rest of the world, albeit in a small way.
My new career in the healthcare area has taught me a lot of things. It has taught me that there is a very large number of fantastic people trying to make healthcare more participatory, letting the patients take more responsibility in their own selfcare. It has taught me that there are a lot of organisations working hard to establish a true partnership between healthcare and the patients. One example of such an organization is the Institute of Medicine, and the meeting they arranged last week titled Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement was a joy to follow on webcast.
But there is so much left to do. We can talk about strategy for change until we turn blue in the face, but to quote Cristin Lind (@durgastoolbox) from the very same meeting: “Culture eats strategy for lunch”.
So many organizations engage patients based more on tokenism than on a wish to take advantage of the true talent of patients.
Maybe it’s time for a new kind of tokenism? A token that you get from taking the patients’ journey?
Great post! And not just because you quote me quoting some other brilliant person.
There’s so much to say here. Tokenism exists in so many forms. My new litmus test is to ask: at what point in this process were patients asked to “engage”? Was it at the very beginning, i.e. did this idea come from a patient or a patient and provider together? Were they part of the planning committee? Was it after that, in implementation–after the agenda was set and the questions were determined, or when the approach was developed? Or was it only in evaluation that patients were asked for their expertise?
Design – Planning – Implementation – Evaluation. The later the patients come in, the higher the chance of tokenism.
Thanks Cristin for your insightful comment! And that’s a very good indicator. However, there are examples of late engagement that still can lead to true change. But of course, in search of true patient talent, the engagement should start as early as possible.
Does maybe the Society for Participatory Medicine have guidelines for patient engagement?
It was disappointing to go to a “Cafe Scientifique” on the “patient evening “and realize those onvolved had been in scientific meetings for at least 2 days previous. The participants have bonded over their teamwork and to the patients it’s hard to get a foothold. Sometimes in the prep for the scientific non patient exercise they actually don’t even publicize the patient event.
So the whole event is tokenism.