PRIMR's 2024 Annual Letter: "We are just getting started"

By: David Grew MD MPH

"PRIMR exists to deliver “ah-ha” moments for patients.  We’re driven to empower patients with knowledge of their disease and the best available treatments. "

∗ ∗ ∗

We are just getting started.

I live for that moment where you’re explaining something to someone and you can see the lightbulb go off.  They get it.  Just a moment ago, they didn’t.  They were lost, stressed and a little ashamed.  But now it makes sense. Relief and a glimmer of newfound confidence.

My first job after college was teaching the MCAT to undergraduates prepping for the medical school admission rigamarole.  I stood at a whiteboard and mapped out simple visual hooks to unlock these kids’ understanding of complex organic chemistry principles they covered 2 years prior.  One by one I could see the recognition of a concept that was buried deep in the pre-med memory vault spring back to life on their faces.

Now as a practicing radiation oncologist, I draw simple pictures of my patients’ anatomy with pen and paper during the consultation.  I sketch out where their cancer is and what other organs are in the area.  I draw what treatments like surgery and radiation will do.  “This will get removed, that will get reconnected here.  Radiation will cover this area.”  In a moment, I can see they’ve intuited the risks and potential complications of treatment.  But also they’ve come to understand the rationale behind the approach.  They have insight.  They have conviction.  They consent to treatment with clear eyes and high intent.

This was all standardly a part of my routine leading into the COVID pandemic.  Suddenly patients started asking to keep my scribbled drawings.  I asked them why and they said it would help them remember the way they understood it when I explained it in the office.   They also had to come alone because of pandemic visitor restrictions - a particularly cruel twist for patients with a new cancer diagnosis.  They said the drawings would unburden them from having to recall our entire conversation from memory when they got home and anxious family members asked “What did the doctor say?”

Somewhere in one of those requests to keep the crumpled paper drawing, PRIMR was born.

At our core, we are a patient education company.  We are fundamentally driven to deliver value to patients by creating a moment of deep understanding where there had previously only been vast confusion and dread.  We exist to serve patients and demystify the treatment options that could alter the trajectory of their lives.

I am grateful for my patients.  In asking to keep my drawings they showed me that these small tokens had personal value.  And so they gave me the idea to convert pen and paper into digital drawings with recorded narration.  I thought, if we can deliver value one-to-one, how about we do it one-to-many with scalable digital resources?  That way, patients can be further unburdened and seamlessly share content about their treatment with geographically distant families… with a few taps on their smartphones.

I put my (admittedly simple and crude) animated videos on YouTube.  It was slow to start.  I think my mom had 48 of my first 50 views.  But slowly, slowly it gathered steam.  Amazingly, at the time of this writing we are approaching 600,000 views and 11,500 hours of cancer patient education content watched.  

Along the ride, we captured the attention of principal investigators (PIs) - the innovation-minded doctors who lead clinical trials.  They had a problem.  While their trials were promising, bringing pre-commercial treatments to cancer centers across the globe, they were complex.  By virtue of being innovative treatment approaches, clinical trials are often hard to explain, and patients have a hard time understanding.  Even more, enrollment, the number of patients who sign up to participate in trials, was lagging.  It turns out, as you might expect, patients who don’t understand a clinical trial are unwilling to agree to enroll.  Very reasonable!

So these principal investigators came to me asking for help solving this problem.  They had seen my videos across social media and thought PRIMR might help convert their 60-page legalese patient informed consent documents into a scalable piece of educational content that any patient could understand.

The initial patient feedback gave us a strong signal that we were onto something.  “I just watched every single video. Gave me a lot of insight so I was prepared for you.”  “A description much needed. I have to make a decision soon. This helps with questions to ask doctors to help make my decision.”  “This short video gave me more information than I received from the doctor today.”  “I wish I'd watched it before my appointment, but at least I know now some of the questions I'll have at my next appointment. Thank you.”

Patients were telling us that our content provided a foundational layer of education.  When they started with this, they could build off it with targeted questions during the precious little time they had face-to-face with their doctor.  The result was a more confident patient, satisfied that they understood the landscape and motivated to pursue their treatment of choice.

While serving patients is always our core driving principle, we came to understand that patient education in clinical trials is a three-focus problem: patients, the staff at clinical trial sites, and the sponsors who fund the studies.  While each side's interests are aligned (enabling access to innovative treatments and advancing the leading edge of medical discoveries), each party has its own unique problem set.  Further, there is a layer of ethical and regulatory considerations that sit atop the entire process.

This milieu may look like a morass to some.  But for us, it is energizing, and as a physician-led organization, we’re empowered to test, iterate and solve it at scale, while also earning and maintaining the trust of the key stakeholders.

Here’s what some doctors leading clinical trials are saying about us:  “PRIMR had a significant impact on my patients making an informed decision about their care.”  “PRIMR was an easy, small time investment that will amplify the work of our colleagues multiplefold.”  “PRIMR was able to help us develop simple, easy resources that can decompress complex studies into high-yield digestible material for patients.”

For healthcare workers, PRIMR was a tool to advance patient care while also saving them time.  

We’ve grown organically through word of mouth, repeat customers, and personal referrals.  As a bootstrapped company, we’re building a grassroots movement instead of costly marketing campaigns.  We have no marketing budget.  Despite our lean culture, we’ve serviced 21 complex cancer clinical trials with our educational content in the first 18 months of existence.  

I was worried the business would be throttled by Institutional Review Boards (IRBs).  IRBs are the gatekeepers that protect patient interests and safety.  Their charge is to ensure clinical trials are performed above the board with no coercion, perverse incentives, or unethical treatment.   As a PI myself, I know well that IRB scrutiny can introduce.  We’re proud that we’ve maintained 100% IRB approval on the first submission - something we did not expect, given the novelty of our content products.  We have now pushed 81 content pieces through IRB approval.

PRIMR exists to deliver “ah-ha” moments for patients.  We’re driven to empower patients with knowledge of their disease and the best available treatments.  When they are motivated to participate in research studies, we want them to have clear eyes about the risks, time commitments, and potential benefits.  If we achieve this goal, we will also serve the healthcare workers at clinical trial sites and the sponsor building the products that advance the leading edge of medical technology.  We love playing this positive sum game because we understand that when we do it well everyone can win.

We are just getting started.

‍