I recently attended a conference that had one of the best methods of patient inclusion I have come across. They started with a patient forum on the day before the conference started. Half a dozen patients talked about different biases in medical diagnostics, based on their experiences and that of family members. As the conference focused on improving diagnostic practices to protect patients, it was a fitting way to start the discussion. The patient presence did not disappear after that, either. Every day kicked off with a short patient experience story and there were sessions geared toward fostering discussion between patients, researchers, and clinicians.
This is exactly how we begin to bring the patient voice forward and incorporate patient experience in a way where it shows up in policy and the structure of research studies (not just the research itself).
Now I am going to ask these folks, who are the leaders in what I want to happen, to take it just one step further. For patients to gain the purchase in the healthcare world that we need to make meaningful change, we need to be viewed and treated as peers. This is a big ask in a space where patients are just beginning to make inroads, but if the healthcare professionals who are already amenable to us contributing can make this one adjustment, I believe the floodgates will open and others will follow.
Currently, on the rare occasion that patients are invited to contribute our views and experiences to the larger healthcare discussion, we are lauded as brave. That feels good for a moment, although I think the brave part is more about the sharing than being a patient. The biological drive to survive is what takes care of the patient part. The healthcare professionals who are listening know better than most what patients have gone through, so we also are treated a bit like curiosities for what we have survived, subject to a combination of pity/sympathy and wonder. It’s nice when the struggle is acknowledged and appreciated, but it negatively affects the power dynamic, and it can stand in the way of full engagement.
The problem is a large part of the impact and effectiveness of patient stories is the emotion it evokes in the listener. People imagining how it would feel if they or their family members went through something similar, or remembering their own medical issues is why patients can be so persuasive. But emotion doesn’t have a place in most professional settings, and the nature of the very thing that legitimizes us as contributors makes it a hard sell to get us at the table even though we are the ones who have to live with whatever policy or safety measure or device or course of treatment is developed there.
Think about the people who are already sitting at the healthcare stakeholder table. They have advanced degrees and have spent years and years studying and practicing in their field. They are experts and revered for their dedication to a field that is in the helping people business. Rightly so. But so are we. We are experts in our own bodies and in our own diseases in ways that someone studying from the outside can never be. We get our advanced degree at diagnosis, when we have the entirety of what could happen thrown at us, usually unexpectedly. We do years of research as we learn how our bodies settle in and react to our unchosen “course of study”. Every year of the rest of our lives with the condition is a year of learning. We learn what constitutes stability, how to follow a regimen or push boundaries in order to be and feel as healthy as possible, differentiate what is part of the condition and what is a normal-person issue like a cold or the flu, how one of those normal-person conditions affects the chronic condition. I could go on.
In many ways, our courses of study are longer and more intense than those of our respected healthcare experts, and the stakes of making improvements are higher because they are so deeply personal.
That said, we are perfectly capable of setting aside the emotional weight of our experiences when discussing and developing and improving, and simply using that experience as a lens to make suggestions, as everyone with research, clinical, and academic experience does. Living it is our normal, as is the discussion of healthcare issues for non-patient stakeholders. The sum of our experiences should give us the same legitimacy as anyone else at the table, and as such we should be treated as peers at the same level as other stakeholders, no less. But also, no more.
Shouldn’t we?
NOTE: In this post, I am speaking mostly of chronic patients, but this applies to acute patients, too. 1983 was a long time ago, but my case of meningitis is a study in what can happen versus what my doctors were taught in medical school. I defied every expectation and even though I almost died and almost was in a wheelchair for the rest of my life, here I stand, literally, in a way where no one would know that part of my life unless I told them.