Ever since the first #HITsm Chat of the year, I’ve been rolling around the idea of “We’re All Patients.” It was kicked off by what I think was probably a well-intentioned tweet by Andrey Ostrovsky, MD who asked to hear from patients:
— Andrey Ostrovsky, MD (@AndreyOstrovsky) January 6, 2017
This led someone to say “Aren’t we all patients at some point?” which got this response from Erin Gilmer along with a whole firestorm of other comments:
— Erin Gilmer (@GilmerHealthLaw) January 6, 2017
First, let’s applaud Dr. Ostrovsky for asking for the patient perspective and let’s not let the firestorm of defining patients overwhelm the fact that he wanted to hear from patients. That’s a dramatic shift from the past where patients might have been an afterthought. Dr. Ostrovsky was asking for patient input 11 minutes into a 1 hour chat. That’s a big improvement.
Second, if you look at the literal definition of patient, it says “a person receiving or registered to receive medical treatment.” By pure technical definition, it’s true that we’re all patients. Hard to imagine an adult that hasn’t received medical treatment at some point. However, when we say that “We’re all patients” it misses the point of why I think Erin Gilmer and Carolyn Thomas, who wrote the post that Erin linked to, said that we’re not all patients.
The reality is that even if we’ve all been to a doctor before, it doesn’t mean that we’re talking from our view as a patient. Many times when you go to a conference or are participating on a Twitter chat, you’re not having a discussion from your view as a patient. Often you’re talking from a work perspective or from a provider perspective and not from a patient perspective.
We know this happens a lot because you’ll often hear at conferences “This isn’t what I want personally, but this is my perspective on it.” Just because you have been a patient at one point doesn’t mean you’re speaking from that perspective at a conference, Twitter chat, blog post, etc. That’s true for me too when writing these blog posts. I’ll write from a wide variety of perspectives depending on the topic and post. It’s often not from the patient perspective.
Along with not necessarily speaking from your own patient perspective, it’s fair to say that just because you were a patient for some “injury or episode of illness”, it doesn’t mean you can share the perspective of a patient with a chronic condition. That’s a very different situation and one that largely has to be lived to fully comprehend.
The reality is that we need to involve as many different patient voices in our discussions as possible if we want to create solutions that benefit patients the most. On that, I think almost everyone agrees. Studies have shown that having a wide diversity of viewpoints, opinions, and perspectives provides a much better solution.
At the end of the day, we can all only share our own personal experience. I don’t want chronic patients talking for me. Chronic patients don’t want non-chronic patients talking for them. In fact, many chronic patients don’t want other chronic patients talking for them. etc etc etc
Instead, we should do everything we can to incorporate multiple perspectives into all the work we do. That’s where we’ll get the best results. We shouldn’t be so arrogant that we try to speak for someone else. However, we also shouldn’t demonize someone that tries to show empathy and raises the voice of another’s perspective either. The reality of complex problems is that we can all be right depending on perspective. So, let’s embrace as many perspectives as possible. We are all humans and most of us want healthcare to be better.
UPDATE: In a great discussion on Twitter with Erin Gilmer that was prompted by this post, Erin highlights a point that I didn’t cover well in the above commentary. She pointed out that many chronic patients’ voices have been marginalized in the past. I’d take it even a step further and say they’ve not only been marginalized but often ignored.
The reality is that the “healthy” patients have more voices making sure their (my) needs are heard. Chronic patients are smaller in number and so it’s more challenging to have their voices heard. Not to mention the last thing you want to do when you’re dealing with chronic illness is make your voice heard. However, in an impressive manner, many patients with debilitating illnesses do just that.
Erin also made a good point that we shouldn’t use “We are all patients” as an excuse to not involve expert patients at the table. We should definitely elevate their voices. As an advisor to many health IT startup companies and having written about thousands of companies, the challenge of incorporating all these voices and perspectives into a product is impossible. There are always gives and takes with limited resources. However, far too many don’t even make a sincere effort. That’s what’s sad.
This post is about elevating more patient voices from a wide variety of perspectives. That produces the best outcomes and discussions.