HLTH 2019: Did Patients Get the Spotlight They Deserve?

There was much to be blown away by during HLTH’s first conference in 2018 – 2,000 or so health care leaders enjoying good speakers and topics while experiencing lots of Vegas-y event touches in a networker’s dream atmosphere. Health plans, pharma, tech, providers, policy and other industry folks were all represented. But there was a noticeable omission – industry outsiders, most notably patients, were nowhere to be found in a conference designed to create a health care system that works better for them.

HealthSparq was a low-budget sponsor the first year (though we did make a big splash with our bathroom humor), so we had the opportunity to provide feedback that patients SHOULD be part of this event if it’s really about the industry making change. Turns out, we were not the only group to notice the lack of patients.

To HLTH’s credit, it was clear they made a significant effort in the second year to right the ship (as well as add more female speakers, but that’s a post for another day). They partnered with MedCity to bring its patient-focused ENGAGE conference as a track. They also hosted the WEGO Health Awards, which was where we chose to put our sponsorship dollars this year through our #WTFix initiative. With a massively increased attendance of more than 6,000 people, thank goodness that in 2019, some of them were patients.

There were patients on stage, but too few people were listening. 

Bodo Hoenen and his adorable daughter Lorelei were featured as the closing session for the ENGAGE track, sharing how they built a robotic arm for Lorelei when she became paralyzed and did so by asking for help in online communities and then sharing everything they learned so they could help others. They received a standing ovation – the only session I attended where that happened. Unfortunately, the room was pretty darn empty. Maybe it was because people were tired as we neared the end of the day or because the hosted bar had drawn a long line.

The WEGO Health Awards also featured inspiring patient stories but that audience was pretty sparse too (and there was even an open bar right inside the room). So with 6,000 in attendance, why weren’t people clamoring to hear from the people we serve? My assumption is that while it sounds really good for health care industry peeps to say they care about what patients think and do, there’s still a massive swath who, when it really comes down to it, do not. They simply don’t see the business value.

But listening to patients is good for business. In an industry so clearly in need of change, patients are driving that change from the outside in. That’s because when faced with health-related challenges, you’ll see moms, dads and loved ones move mountains to get what they need. The industry needs that innovative force and passion. Before our 2018 #WTFix conference, I spoke with a former chief marketing officer of a health plan and she said something that really resonated with me: For those of us in the industry, one of the best things we can do is get out of the way – simply, let’s encourage the innovative spirit of patients instead of making the system harder for them to navigate. And I’ll add to that: We can listen, really hear what patients are saying, and let it affect the choices we make as we do our jobs.

Some industry experts are sharing their stories and advocating for patient voices.

I’m definitely not poo-pooing the progress made in amplifying the patient voice at this year’s event. There were some bright spots on the main stages as well. Mark Ganz, Cambia CEO (and, full disclosure, the parent company of HealthSparq and my boss’ boss’ boss), got on stage in a room full of thousands and shared the story of his brother as a patient and he as a caretaker. And I see the choices that he’s making as the head of a company in the thick of the industry that do, with authenticity, value patients’ experiences. I missed a session featuring Ivelyse Adino, CEO of Radical Health, who emphasized the importance of listening to patients. She shared the story of a patient whose complaints about leg pain weren’t heard carefully enough who was sent home as healthy only to discover later that cancer had spread all over their body. She explained that it’s patients who have rich experiences, who navigate the complexity of health care and who can express their pain points.

Look, I would venture to guess that most people who attended HLTH were there to network and make business deals. There’s nothing wrong with that. But many of the people who choose to listen, participate and share in the patient movement do so because they already see and understand the value of doing so. How do you get the people who really need to hear from patients to listen to them?

I don’t have a perfect answer. At HealthSparq, we will keep bringing consumer/patient panels to health care conferences so the industry can hear from real people. We will keep pushing on our WTFix initiative and sharing people’s stories of overcoming challenges to drive change. And, while there are still not enough big wigs in our industry who value the patient voice, the numbers are growing. Next year, I’d love to see us come so far that an outsider will be front and center on the biggest stage at HLTH with a room full of people listening closely.