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Why including patients matters.

“Let me get a sense of the room,” began Neda Amidi, Partner and Global Head of Health at Plug and Play. She was moderating a panel about remote patient monitoring at the HLTH conference in Las Vegas in October 2019.

“Raise your hand if you’re a startup [hands raise], industry [hands raise], tech [hands raise], and any patients in the room?” she asked.

The response to that last segment was concerning, but not surprising. Three. Just three people — myself included — raised their hand that they were patients, in a room of hundreds.

What an elegant, albeit frustrating, rebuttal to the parroted adage of “but we are all patients.” If you don’t raise your hand to the prompt, “who here is a patient?” then you are not there to share the patient perspective.

Sure, some of those non-hand-raising audience members may also live with chronic or acute health conditions, but it was not something they publicly identified with, therefore they cannot be expected to represent the much needed patient voice at a health conferences.

christinea farr tweet about lack of patients at conferences
Christina Farr, health and tech reporter for CNBC, commenting on the lack of patient representation at health conferences.

The problem is not unique to HLTH. Like the larger innovation ecosystem, health conferences have also left out the patient perspective. I spend my days at Savvy helping companies include patients insights in their product development by having them connect directly with real patients (gasp!).

Just like the innovations being talked about at these meetings, we must also make conferences more inclusive, and therefore valuable, to both the attendees and the people they are trying to serve — patients.

And while having patients present is important, some ways are more valuable for discourse than others.

How patient participation can improve conferences

Color me a pragmatic optimist, but I think there will be a sea change when it comes to inclusivity at conferences, maybe not this year, but certainly this decade. I’m not just trying to Secret my way to the end goal, positive thinking alone won’t get us there. I believe inclusive conferences are a smart business decision, and smart organizations will evolve with the market and what their community wants.

I spoke with some of these conference organizers to understand how they were thinking about including patients moving forward.

If you don’t raise your hand to the prompt “who here is a patient?” then you are not there to share the patient perspective.

Startup Health, which hosts its Startup Health Festival during the mayhem of the JP Morgan Investor Conference in San Francisco, tells us, “We believe the patient perspective is just as important as market trends when it comes to health transformation.” The holy grail — consumer behavior matched with real consumer insights!

In only its second year, HLTH is also working to iterate based on the feedback it receives. “The HLTH team welcomes all feedback from our 2019 event and recognizes that there is always room for improvement. We are always listening to our audience to further improve our program year after year. After our 2018 event, we committed to increasing the diversity of our speakers for 2019. We heard feedback about including more of the patient voice and made great strides to improve this in 2019.”

Patients on panels

In 2019, HLTH organized a track with MedCity News, Engage, which focused on the patient experience. While the topic is incredibly important, the speakers in this track included investors, physicians and executives from health systems, payers, and digital health companies. How can we talk about patient experience without patients?

If we want to be patient-centered and treat patients as partners in innovation, we can’t keep patients segregated.

Last year, the Startup Health Festival came close to showcasing one of my dream panels. They had an entrepreneur and a patient who used their product on the same panel (for the record: my dream panel is an investor, their portfolio company, and a patient end-user of the product — discuss!).

lupus patient christine von raesfeld on stage at Startup Health Festival 2019
Brian Newman, CEO of Sanguine Biosciences (left) and Christine Von Raesfeld, lupus patient and Savvy Co-op member (right) at Startup Health Festival 2019.

Brian Neman, CEO & co-founder of Sanguine Biosciences was joined on stage by Christine Von Raesfeld, a patient-user of Sanguine’s services (and a Savvy Co-op member) to share her story and how the health startup has empowered her to help herself and others.

At the end of 2019, when I asked the folks at Startup Health how they were thinking of including patients in 2020, they told me, “This year, we are exploring a similar format and encouraging patient participation on stage once again.” I’m curious to see what is in store (dream panel, please!).

Patients on the main stage

I personally love a good panel discussion or fireside chat, but there can be value in keynotes and main stage presentations. I say that with some trepidation, because on average, I find many executive speakers are so rehearsed and their presentations vapid in content. There are often a lot of big lofty aspirations with few tangible details of what they are actually doing to achieve them.

How are presentations like that helpful? If people won’t talk about how they are actually fixing the problems, let’s at least get the problems out in the open so more people can think about how to solve them. This means hearing from patients.

How can we talk about patient experience without patients?

Patients should not be used as inspiration porn, but their stories can help elucidate what it’s like for someone struggling through the system.

It can be tempting to have a healthcare industry executive share their patient story. But most people who interact with the healthcare system as patients do not come from the same privilege, both in their understanding of the system and access to resources. It’s like seeing celebrities in drug commercials, your reality is not the same as a single mother working two jobs while trying to manage her lupus. Let’s hear those stories.

Jessica Melore, a patient advocate, sharing her story on Twitter
Jessica Melore, patient advocate and speaker, sharing her story on Twitter.

Stanford Medicine X has their ePatient Scholarship Program, which brings patients to the meeting where they deliver TED talk-like presentations. Jessica Melore was one of those patients, this incredible woman lived through a heart attack as a teenager, a heart transplant, leg amputation, and recurrent cancer.

I first met Jessica Melore when she was a keynote speaker at The Conference Forum’s DPharm: Disruptive Innovations conference. Jessica shared her story not to get pity or to sell a product, she shared it to implore decision-makers to make a difference. Unfortunately, we lost our Wonder Woman last year while Jessica was awaiting a heart and kidney transplant. Her legacy lives on in other patients who are able to share their stories.

Other ways to involve patients at conferences

Captain Obvious here, but let me state for the record that more patients need a way to attend conferences. I’ve already written on the privilege it takes currently to attend conferences. It’s not an easy problem to solve, it takes time, money and effort, and creativity.

Melissa Talwar, savvy co-op member, receives WEGO Health award
Melissa Talwar, of Support Fibro and a Savvy Co-op member, accepting the WEGO Health Award for Healthcare Collaborator at the HLTH conference 2019.

In 2019, HLTH hosted the WEGO Health Award ceremony, recognizing the achievements of patient advocates. While these patients deserved the stage, acknowledging them with an award does not meaningfully advance our knowledge of what they are going through and give them an opportunity to respond to conversations with other stakeholders.

Just like in the innovative process, it’s important to learn, iterate, and improve. HLTH tells us, “We are actively working to develop a stronger patient presence and are intently listening to our audience to do so.”

It starts with seeing the value that patients bring, and then matching that value with resources to support their participation. Not only should patients attend, but their presence shouldn’t go under the radar because they don’t have the same access to capital as large corporations. There are many creative and valuable ways to incorporate patients more meaningfully in the conference experience.

It starts with seeing the value that patients bring, and then matching that value with resources to support their participation.

Upcoming initiatives

We are excited to be working with some organizations to help them think outside the box about including the patient voice at their meetings. While these are small steps, they are a start!

Patient office hours

Next week, 2020 begins in earnest as JP Morgan descends on San Francisco. This year we will be holding Savvy Patient Office Hours at the Startup Health Festival on Jan 13th. Attendees can sign up for a slot to come sit down with yours truly, someone who has raised their hand to the question “who in here is a patient?” for the past three decades.

This time can be used to get some quick feedback on your product or service or understand why, when and how you should be getting regular patient input in the innovation and commercialization process. And if you’re not at the Startup Health Festival, we’ll be holding an extra day Jan 14th offsite for those interested. Sign up to schedule a meeting.

Patient input on the solutions presented at conferences

Another exciting initiative is our collaboration with The Conference Forum. Years ago, a single patient opened their eyes to the power of including patients in their meetings, from attendees to speakers. “Now, as a natural evolution and new strand for patient feedback, we’re delighted to be joining forces with Savvy Cooperative to connect patients with technology and service companies,” says Valerie Bowling, executive director.

To ensure the highest quality content at the meeting, The Conference Forum wants to make sure the companies and vendors presenting at Patients as Partners 2020 are patient-centered themselves. That’s why Savvy is helping to connect those presenters with patients prior to the conference to get feedback on their product or service. “Our new collaboration with Savvy Co-op will give patients a voice in sharing their experience with new technologies, products and services as well, adding further weight to the drive for more efficiency and patient inclusion in clinical research.”

Patient content and discord

While I don’t consider myself an influencer, I have no problem speaking up to advocate for others. That’s why I am excited to join HIMSS’s new Digital Health Influencers, a group of ten rockstars, including three who identify as patients — myself, Stacy Hurt, and Vincent Keunen.

Jen Horonjeff joins HIMSS digital health influencers
HIMSS Digital Health Influencer program promotional material.

HIMSS notes that the “Deliverables for this program will consist of a series of digital content campaigns and resources co-developed by HIMSS digital influencers and subject matter experts. Audiences can expect year-round multimedia content that spans healthcare topics, formats and perspectives shared across HIMSS content platforms.”

The program just launched, so TBD how it will influence the various meetings HIMSS has its hands on, but you can rest assured I will be advocating for patient inclusivity!

The future

This is only the beginning. We at Savvy are committed and excited for how healthcare conferences in the next decade can be transformed for the better when patients and innovators can intermingle at conferences.

The danger lies in when people get complacent. Some organizations hide behind a single case they can cite when they involved patients. If you can point to only one time you were inclusive of patients at a conference, your work is not done. If you can point to a hundred times you were inclusive of patients at numerous conferences, your work is still not done. Let’s keep moving forward.

Here’s to working together cooperatively to make 2020 even better.

Savvy Cooperative is improving healthcare for patients by helping companies create products and services that patients actually need. Savvy provides an online marketplace where companies and innovators can connect directly with diverse patients and consumers to obtain patient insights for clinical, user experience and market research. Using a unique co-op model, Savvy Cooperative is the first patient-owned platform that empowers patients to use their health experiences to advance research, resources and product development. For more information about Savvy Cooperative, please visit and follow Savvy Coop on Facebook, Instagram and Twitter.

Jen Horonjeff
Post by Jen Horonjeff
January 8, 2020
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.