Last week I attended my second JP Morgan healthcare conference. Prior to founding Savvy Cooperative, I was an academic, human factors consultant and patient advocate, so my first year I went to be a fly on the wall and immerse myself in the industry side of healthcare.

I had a lot to learn, but one thing in particular perplexed me:

Where were the patients?

Nothing About Us Without Us

I asked about the lack of patient involvement last year, and was met with “well this is an investor conference, it’s not the place for them.” I was shocked, but being new to this side of the tracks, I just took it as a data point.

Now a full year later (and countless validation for our model at Savvy to bring the patient voice into all settings where people are talking about patients), I ask the same question: where are the patients?

I think it’s a missed business opportunity. Investors talk about market trends, why not corroborate that with the patient perspective? One of the most obvious and seamless opportunities is to include patients on panels with founders/executives. At Health 2.0's WinterTech, they had a parade of founders and their corresponding investors come on stage, why not add a user of their digital health platform to share their experiences?

It’s one thing for a founder to preach the value of their company, it’s another for a patient to do so.


Healthcare Needs More Empathy

We need to listen more and project less. Healthcare is complicated, messy and frustrating. We can lose sight of why we are here — to improve the lives of patients and their families. Hearing their stories and what they go through is not only informative, but can reignite the fire that the bureaucracy of the system can snuff out.

We Are All Patients — But Are We The Right Patients?

I realize ‘patient’ is a loaded term, and that either now or in the future, we will all utilize the healthcare system. But when it comes to innovating with the patient perspective in mind, are we the right patients?

I have several forms of inflammatory arthritis, a brain tumor and a host of other fun things, yet — if I was asked to comment specifically on what it’s like for a transplant or a heart disease patient, I wouldn’t be comfortable speaking on their behalf.

Similarly, you can ask physicians to speak broadly on the practice of medicine, but

You wouldn’t ask a gynecologist to treat lung cancer, why do we expect any different from patients?

We need the right patients, for the right context, at the right time.

Call To Action

Conferences can become Patients Included Accredited, and I strongly urge organizers to consider how to trend in that direction.

Of course, patient involvement extends deeper than just including patients at conferences. I hope companies, innovators, and investors alike can appreciate the value of working with patients in order to design, develop, and invest in products and services that meaningfully solve the pain points of patients.

While we are all patients — if some day you are diagnosed with brain cancer, you’re sure as heck going to hope that treatment options were designed with brain cancer patients’ input.

Savvy Cooperative helps companies get the consumer and patient insights they need by providing an online marketplace to connect professionals directly with patients of all conditions. Reach out if we can help. or follow us on Twitter @savvy_coop.

Jen Horonjeff
Post by Jen Horonjeff
January 16, 2018
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.