Many folks tell time by the JP Morgan Healthcare Conference. To investors and decision makers, January means hearing about the hottest trends in healthcare over presentations, meetings in hotel lobbies or crowded Starbucks, or throughout an aggressive networking event schedule.

With this year’s event being held virtually, you may wonder if you’re missing out on key conversations about the next big thing.

Here’s a breaking news bulletin for you

JPM 2020 did not predict that telehealth or areas like decentralized trials would blow up. In fact, the sentiment was more of confusion around digital health.

But you know who did predict these areas were in high demand? Patients.

For years, patients have been either indicating or flat out pleading for certain innovations to become more mainstream. It feels almost comical. It makes me think of Kate McKinnon’s SNL character Dr. Wayne Wenowdis, whose classic line is, “we know this” (if you haven’t seen it, I’ll wait…).

Let’s highlight a few of the trends that took off in 2020

Telehealth is a viable patient care option with widespread adoption

WE KNOW THIS — Patients have been wanting ways to connect with providers remotely, especially across state lines.

Decentralized trials open up opportunities for more patients to participate in trials

WE KNOW THIS — Patients have been asking for ways to have access to cutting­-edge treatments that don’t require them to relocate, travel, or disrupt their schedules.

There is significant mistrust in pharma that is not easily mended overnight

WE KNOW THIS — Black and Brown communities can readily cite Henrietta Lacks and the Tuskegee Syphilis Study. The chickens are coming home to roost with the vaccine rollout.

Racism is a public health crisis

WE KNOW THIS — You don’t have to go any further than asking patients of color, but if you looked at the literature, you would also find providers and algorithms recommending better care for white patients than Black patients.

So if we know this, then why hadn’t we done anything about it?

 

Two months before the WHO organization declared COVID-19 a global pandemic, I had tried to demonstrate the power imbalance that exists between patients and decision makers. At last year’s JPM, I stripped down and wore a hospital gown on stage. By and large it was mostly met with comments like “you’re so brave,” as opposed to earnest introspection about the state of healthcare.

So what changed and why did it take us so long to catch up to what patients already knew? Well, some of you are going to be uncomfortable with this answer, but it’s important for us to sit with that discomfort.

In 2020, external forces like a global pandemic and widespread protests calling for social justice brought things to a fever pitch. People with privilege and in positions of power started to feel what it’s like for patients trying to access care, and could no longer ignore the suffering of Black and Brown communities.

Chronic illness patients had a shared sentiment of “yeah, welcome to my world” when it came to navigating a complex healthcare system while trying to maintain their health and safety, and even advocating for work from home accommodations or remote clinical trial options, both which were frequently denied because “it couldn’t be done” (read: there was no financial incentive to do it). Sure, there were regulations in the way, but we now know that these were not insurmountable.

People of color put in overtime this past year to try and educate privileged folks about racism in a way that was accessible to them, which frankly must have been exhausting (not to mention the work they did to restore faith in our democracy). And through it all, many of these populations were and continue to be the hardest hit with COVID-19.

The year 2020 opened our eyes to what patients already knew: there are systemic issues around health equity and access to care that must be remedied.

Patients were right, now what?

The market is catching up to what patients want and need. But while we have made a lot of progress to try and provide remote care during a pandemic and increase initiatives like enrolling more diverse participants in clinical trials, these efforts were deployed swiftly and oftentimes without the consult of our healthcare experts: patients.

I am grateful that things like telehealth rolled out quickly as a stopgap, but we now need to go back — with the help of diverse patients — to examine many unaddressed questions.

Telehealth:

• Is it working for everyone? Which therapeutic areas or populations struggle the most?
• How does access to technology and broadband impact this?
• Are people comfortable sharing their homes with providers?
• Are people able to speak openly about health conditions when family members/housemates are within earshot?

Decentralized trials:

• How do the outcomes and endpoints change when done virtually?
• Do people feel like they have same access to support during the trial?
• Do people want study teams coming into their homes?
• Are people confident using the various tools and technology as part of the trial?
• Are people comfortable with remote patient monitoring and being tracked?

Diversity initiatives:

• How are companies and institutions going beyond lip service to address health disparities?
• How is a concerted effort to regain trust being developed and deployed?
• What budgets and resources are being allocated to do the work?
• How are companies looking at their own diversity metrics?

We will unpack these and other hot areas in other subsequent blog posts.

Ask Patients

The theme here is: Ask patients. Patient insights are the secret weapon that would have given you not-so-insider tips on areas to invest if you had just asked and listened.

2020 has been more proof positive that patients unlock crucial intel. Include patients in your work from the idea stage all throughout your development and launch.

Learn more

Want to learn more about how Savvy Cooperative’s networks of diverse patients can help you step up your innovation game? Visit our website or email us at hello@savvy.coop.

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Savvy is hiring! If you want to join our team of rockstars working tirelessly to make sure health innovations are made right (read: with patients), then check out our job posts.

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.