you have questions - patients have answers.
This is the third part of a five-part series. Read Part 4 here.
We are all patients. It’s something people love to say. It even showed up as the subject line for an email campaign from a healthcare company recently. I groaned when it hit my inbox (and subsequently groaned again when they doubled down on the campaign).
As well-meaning as people may be when they say this—trying to evoke a sense of empathy that we may all someday face health challenges—the truth is that it feels dismissive of the experiences of people who are patients today, especially those whose lives have been rocked by chronic illness, cancer, loss, and the countless challenges our current system inflicts on patients.
Saying All Lives Matter, rather than the appropriate Black Lives Matter, dismisses, denies, and shuts down the important discussion that needs to happen about systemic racism. It silences the conversation that focuses on someone else’s experience in favor of remaining the protagonist of the story and controlling the narrative.
In a similar vein, saying “we are all patients” keeps industry professionals who say it in control of the narrative, repudiates the plight of patients, ignores the unique issues faced by different populations, and silences patient voices.
Of course there are important differences here that should be called out so as to make clear that this is not to minimize the importance of the Black Lives Matter movement. Because in the case of patient experience, however improbable it may be that an industry professional would be diagnosed with the exact condition they are working on, it may be possible. Whereas those of us who are not Black will never experience what it is like to exist in this world with Black skin.
I’ll tell you a little story. The “we are all patients” conversation was actually the subject of my first Twitter troll (you’ll never forget your first!). I remember it well. It was during the JP Morgan healthcare conference in 2017, and I was commenting about the lack of patient perspective there (as I have in 2018, 2019, and 2020 as well—we still have work to do!).
This guy not only went on a tirade in reply to my tweet, but then DMed profanities at me. I generally assume that trolls have little influence and low following, but this guy worked in the healthcare industry and had tens of thousands of followers. He had a platform to publicly bash a patient and when that wasn’t enough for him, he continued DMing me like a petulant child...a child who says a lot of expletives.
It begs the question, why is asking patients—real patients with the disease or criteria of interest—so threatening?
Just as white folks cannot and should not speak on behalf of BIPOC and Hispanic communities, industry professionals should not be speaking on behalf of the patient populations they are trying to serve. To be honest, I see far too many people working in the healthcare industry who are using the cover of “we are all patients” to get out of doing the work, work which could potentially lead to them hearing things they don’t want to hear as it may threaten their product or service roadmap. Believe me, it’s better for your bottom line to hear feedback sooner rather than later!
In my first blog in this series I wrote about how I couldn’t speak on behalf of other patients with different backgrounds and experiences than my own, and in last week’s blog I demonstrated what happens when industry professionals try to represent the patient perspective.
It doesn’t mean my experiences or those of my industry colleagues are invalid, just that they aren’t inclusive. Just as saying Black Lives Matter doesn’t mean that the lives of other races don’t matter, it’s just calling out the systemic issues uniquely facing Black individuals that need to be acknowledged and rectified in order to reach racial parity.
Next week mark’s one year since George Floyd’s murder. While this tragic murder has undoubtedly put police reform at center stage, its ripple effects can be felt in unlikely places, including patient advocacy.
Previously I have written about how advocating for Black lives IS patient advocacy. I am encouraged by how many more companies I am seeing that are devoting resources to ensuring they hear from diverse patient voices, like the work we did with Boehringer Ingelheim around diversity in clinical trials.
If I can be so bold, I think a leading factor to this focused attention is that people have had to look in the mirror and recognize that they cannot pretend to understand the experiences of BIPOC individuals. This is what makes “we are all patients” similarly troubling.
So please think twice before you say “we are all patients.” To those of us living with unique experiences because of our disease, race/ethnicity, socioeconomic status, or any number of targeted characteristics, saying “we are all patients”—and worse, believing it—is a way of silencing those of us who are out here trying to be heard and make a difference in a highly paternalistic system that was designed without us.
If people are serious about being patient-centered, they have to sit with the discomfort that they do not have all the answers. And if they are serious about being inclusive, then they need to allot the time and budget to engage diverse patients that help get them the insights they need to make products and services that actually meaningfully improve the lives of the communities they serve.
Thanks for reading! Continue the series with part four here.
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.
Savvy Cooperative helps the healthcare industry create patient-centered products and solutions by providing a marketplace for patient insights. Pharma and startups alike can connect directly with patients to participate in clinical, UX, and market research. Savvy’s unique co-op model leverages its members’ networks to quickly recruit diverse patients, and pays patients for sharing their insights! Savvy’s award-winning co-op has been featured in FastCompany, TechCrunch, The Boston Globe, and named one of the 50 Most Daring Entrepreneurs by Entrepreneur Magazine.
you have questions - patients have answers.