The recent #TopOfMind2018 conference hosted by the Center of Connected Medicine was one of the best events of 2017. A stellar lineup of speakers was matched by an equally outstanding group of attendees. Together this combination created an atmosphere of realistic excitement – a unique mixture of exuberant enthusiasm for the latest healthcare technology (Artificial Intelligence, Machine Learning, Cybersecurity, Home Monitoring) tempered by sobering doses of reality (lack of patient access and poor usability).
One of the most engaging presentations was delivered by Jini Kim, Founder and CEO at Nuna. She opened by recounting her hilarious first-ever conversation with President Obama. Very early one morning (around 3am PT), Kim got a call on her cell phone from an unknown Washington number. When she answered the person on the other end introduced himself as President Obama. Kim reacted as I’m sure many of us would – with disbelief – and said as much to the caller. Obama laughed and said “I get that a lot, but seriously this is the President of the United States and I’m calling because your country needs you”. Kim compared that moment to feeling like a superhero being invited to join the Avengers.
Kim was one of six people handpicked by the President and his advisors to fix the failed Healthcare.gov website. For the incredible behind-the-scenes look at how this team was recruited and how they fixed the site, check out this amazing Time article.
In front of a slide that showed her company’s mantra, “Every row of data is a life whose story should be told with dignity”, Kim told story after story about how healthcare organizations would bring her in to help solve difficult healthcare problems. What Kim realized through that work was how badly health data is stored, protected and used.
In project after project, her team was tasked with bringing order to data chaos. One of the biggest challenges they encountered over and over again was bringing together massive amounts of data that was stored in different formats and used different terminologies.
Kim’s presentation was an effective counterbalance to the presenters just before her who had spoken excitedly about the future of Artificial Intelligence (AI). She cautioned the #TopOfMind2018 audience not to get too distracted by the shiny new AI object.
So much work needs to be done on the basics first before we can effectively apply AI. We need to get back to basics: data integrity and data cleansing. It’s not sexy, but if we don’t fix that then the more advanced technologies that layer on top will simply not work.
— Colin Hung (@Colin_Hung) December 7, 2017
The session presented by Erin Moore, patient advocate and healthcare innovation consultant, made the biggest impact on the audience. For 45 minutes, she shared her deeply personal healthcare story, which started when her son Drew was diagnosed with cystic fibrosis seven years ago. Moore took the audience on an emotional roller coaster ride that mirrored her own family’s journey – from small wins (finding a doctor who would listen) to draining setbacks (medications changed without explanation) and from serendipitous windfalls (a researcher sent her an app that encouraged Drew to take his medication) to scratch-your-head moments (having to manually build Drew’s medical record by going to each provider and filling out forms in order for the information to be released).
Rather than asking, ‘Why did Drew fail the treatment?’ We need to ask, ‘Why did the treatment fail Drew?’ Thank you @ekeeleymoore for sharing Drew’s story and your #heartspeak w/ us. 🙏🏼💞🐉 cc: @JoPeKim @kellyjmckee @LillyPad #TopOfMind2018 #hcldr #pinksocks #heartspeak pic.twitter.com/ijVJQNQ3Om
— Larry Gioia (@LGin412) December 7, 2017
Listening… understanding… connecting…. to the patient’s perspective at #TopOfMind2018.
— Rasu Shrestha MD MBA (@RasuShrestha) December 7, 2017
There were two memorable takeaways from Moore’s presentation. First, was her story of how eye-opening it was for Susanna Fox, then Chief Technology Officer of the US Department of Health and Human Services, to spend the day shadowing Drew (virtually). Whenever Drew had to take his medication, Fox would pop a Tic-Tac. 500 Tic-Tacs and multiple hours waiting for appointments later, Fox had a new appreciation for how all-consuming it was to be the caregiver to someone who has cystic fibrosis. You can read more about Fox’s experience in her revealing blog post.
Second, was Moore’s double challenge to the audience:
- To truly walk a mile in your end-users world when creating/designing the next generation products.
- To make products truly interoperable.
#TopOfMind2018 – A patient’s perspective: @RasuShrestha “What do you want the most from your providers?” @ekeeleymoore “Interoperability and Bi-directional Communications” – empower patients to achieve participation in goals and outcomes. Priceless! @UPMCnewspic.twitter.com/7xKGXu5Uze
— Vivify Health (@VivifyHealth) December 7, 2017
The best unscripted moment of #TopOfMind2018 came from Amy Edgar, a #pinksocks #hcldr #TheWalkingGallery member. In one of the early Q&A sessions, she asked the speaker “How do we prevent digital health from becoming the next snake oil”. For a moment there was stunned silence as the room absorbed the full weight of Edgar’s comment.
For the rest of the day #TopOfMind2018 master of ceremonies Rasu Shrestha and other presenters made reference to snake oil. Edgar’s comment was even the inspiration for a recent HCLDR tweetchat that followed on the heels of the conference.
Overall #TopOfMind2018 was one of my most memorable conference experiences of 2018. The presentations were interesting. The venue was fantastic. Everything ran smoothly. Above all the people at the event were amazing.
Special Note: Thank you to Larry Gioia for organizing an amazing meetup during #TopOfMind2018 that was inclusive of #HITsm #HITMC #HCLDR #pinksocks and #TheWalkingGallery