you have questions - patients have answers.
This is the second of a five-part series. Read the third part here.
"Map out all the steps involved in order to start a lemonade stand.”
That was an exercise posed to my fellow entrepreneurs and me during a startup bootcamp many years ago. It was meant to be an MBA crash course and get us thinking about supply chains. In this scenario, they wanted us to think about the farmer who needs soil, water, and seeds to grow the lemons, the driver who needs to pick up the lemons and transport them to a distributor or farmers’ market, the grocers who need to stock and sell the lemons. Of course, one also needs to think through how the cups, pitchers, and stand materials come to be as well.
Last week I wrote a post about the need to consult with the right stakeholders (ahem—patients) in order to see the full picture and understand unique experiences of diverse individuals.
I could see the same need in this lemonade scenario. While uncovering the resources and challenges faced by suppliers was important, I couldn't help but wonder about the motivations and barriers faced by the lemonade purchasers. What did it take for them to get to the lemonade stand and finally drink that refreshing glass of lemonade?
I saw this as an interesting thought experiment. One that quickly informed one of my favorite activities to do when I host industry workshops.
It goes like this: I ask the attendees to think through all the steps that are involved in order for a patient to get a new prescription medication. I let people work in pairs or small groups, then report back their responses.
"Map out all the steps that have to happen in order for a patient to be able to take a new medication.”
When teams share back their responses, I inevitably hear the same thing: they itemize copious details about Phase I-III clinical trial studies, talk about FDA approval, and identify market access challenges. Then, as if with a sprinkle of pixie dust, they magically jump to the doctor prescribing the medication and the patient takes it. The end. Easy as that.
Meanwhile, if you ask patients the same exact thing, their focus is on all the hurdles and hoops they navigate and jump through to get said medication. From getting to the doctor in the first place to prior authorization and pleading with insurance companies during bathroom breaks at work, to not having bus fare to make a separate trip to the pharmacy.
These are extremely different responses to the same prompt. And this is part of the danger of assuming "we are all patients.” People need to recognize and admit that there are other filters or lenses with which they view a problem through—in the case of the activity described above, their professional perspective was biasing their understanding of the question and response.
• • •
This reminds me of another situatio I have written about in the past. I was attending a conference session and the speaker wanted to get a feel for who was in the audience. Asking people to raise their hands, they progressed through asking who was from a startup, a health system, pharma, etc. When they asked who was a patient, only 3 of us—out of hundreds—raised our hands.
This was extremely telling. Bravo to the attendees having self awareness that that is not the perspective they were there to represent, but you can't have it both ways. The way I see it, you can't say “we are all patients” and then only identify as one when it’s convenient. Those of us living with chronic illness don’t get to pick and choose when it’s part of our perspective—it is ALWAYS part of our perspective.
Yet an important takeaway I want people to understand is that there is no shame in that. In fact, there is beauty in the humility.
Here's a life lesson in general: You don't have to be all the things. And in this case, it's okay to not be both the patient expert and industry expert. Let's embrace each other's unique experiences and attributes and work together to get the richest and most robust insights possible.
Tune in next week as we get even more real about the potential toxicity of saying "we are all patients,” and the steps we can take to ensure that we innovate equitably by making sure the right voices are being heard!
Thanks for reading! Continue the series with part three 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.