Metronome: Tech, alignment and trust in healthcare

I’m an innovator, a systems thinker, a convener of like-minded people, and over my lifetime, I had developed a sense that the healthcare system needed fixing.

Almost exactly five years ago, I naively started figuring out what that looked like.

At the time, I produced innovation salons (I called them Disruptive Diners) where I brought existing and potential stakeholders together for networking, lightning talks and opportunities to collaborate. Topics like gamification, open source, biohacking, nanotech and business models for 3D printing allowed me to bring people together who didn’t yet have a forum to collaborate. That would hopefully lead to opportunities for consultation and other projects.

In early 2012, I found out about the Qualcomm Tricorder XPRIZE. This competition was to award $10 million to the team that could produce a handheld device with biosensors that could detect disease, monitor vital signs and essentially act like a primary care physician. It was named after the miracle device Dr. McCoy used in the original Star Trek series to instantly diagnose and treat almost any disease or injury.

I assumed tech like this was ready to scale to everybody for every condition and essentially automate healthcare.

This intrigued me. I’ve had a heart condition since I was a teenager. I was used to telemetry and the insights hidden in data. I had gone from spending weeks in the hospital having invasive tests done and being on investigational drugs to having an implanted device that monitored and treated me 24/7 and automatically communicated with a remote care team. From monthly doctor visits, I now only had to see my cardiologist every couple years. I assumed tech like this was ready to scale to everybody for every condition and essentially automate healthcare.

So, with this background, I gathered an audience of mobile app developers, researchers, entrepreneurs, patient advocates, physicians, wearable tech engineers, and designers. I happened to know Greg Maryniak, co-founder of the first XPRIZE, the one that resulted in a private space industry populated with SpaceX, Blue Horizon and Virgin Galactic, and asked him to speak about why prizes are a good way to innovate. I asked Dr. Cindy Haines, a physician, medical school professor, and speaker on evidence-based health innovation to talk about data. I asked a designer and science fiction buff to talk about what we could learn from science fiction about how we would use such a device.

Friends at the St. Louis Science Center let me host the event in their planetarium. We were going to talk innovation under the stars and it was going to be great.

The event came. Greg’s talk was great. The designer inspired us with other ideas from science fiction that were just waiting to be turned into real products. Then Dr. Haines spoke about evidence-based care and the deluge of data that was sure to come from all of these sensors. She talked about how physicians already have access to lots of data. In the current system, she pointed out, the financial and legal incentives are to compartmentalize it, to keep it in a chart or file for use in an office visit when the doctor is compensated. Conversely, the insurer needs data to make sure money is being spent efficiently, so they collect even more data to monitor and manage the doctors’ effectiveness and limit unnecessary medical expenses. The data expectations of these two groups make them competitors.

If people were ultimately still going to need their doctors to write prescriptions, do surgery or otherwise treat them, and need insurers to pay for it, we had to not add a lot of technology that could just get in the way. From Dr. Haines, we learned that tech would have to make data easier to use, not just create more.

Thanks and enjoy your cheesecake!

It was a great event. The conversations among the speakers and attendees were great and inspiring. At around 7:30, I stood up and thanked everyone for coming. I then closed with a completely ad-libbed sentence, “What I’ve heard tonight is that the problem we see in healthcare won’t be solved by a company working alone and isolated. It sounds like if evidence-based, personalized care is going to emerge, it will take an ecosystem working together to make it happen. Thanks and enjoy your cheesecake!”

Something odd happened as people left the planetarium that night. Attendees stopped to thank me and ask, “When are you going to start building it?”

What? Building WHAT? I was there to encourage them to work together, not compete with them. Could I put together a team that would win $10 million?

For the next few weeks, I kept getting the same question. Finally, I realized that they thought I had some vision for a solution. In reality, I only had a vision that there could be a solution, not what it was. I decided to spend some time asking these people what the attributes of this solution they imagined me describing were. Gradually, what emerged were the attributes of a product that was:

• As intuitive, ubiquitous and cheap as a smartphone, or embedded in one
• Supportive of or superior to every existing sensor, every existing dataset, and all those that would come along later
• A universally used platform to make data exchange easier for all, so as not to be a competitive threat to any of the existing well-funded technology companies
• Simple, not adding unnecessary complexity so that the average person could use it to manage their day to day health, but extensible to allow it manage chronic or co-occurring conditions
• Facilitate the comparison of individual and ambulatory data to genomic and other larger datasets to enable personalized medicine
• Adept at producing data that could be shared selectively and on-demand between patients, caregivers and insurers when they needed it, not continuously deluging everyone with PHI (personal health information) that would be difficult to secure
• Good at incentivizing people to make healthy choices — not just at collecting data

Wow! This would be an amazing product!

But what could I do? Could I develop it? How? Who would pay me? How would I get the resources? How could I pay the bills in the meantime?

I decided to put together a pitch deck and see if I could raise funding. I came up with the name Metronome — the minimal amount of technology to synchronize the efforts of the maximum number of people. I put up a simple website. I started dialing for dollars and co-founders. I got a lot of rejection:

“You’re trying to boil the ocean.”

“The incumbents will never let you succeed.”

“The money in our healthcare system is in treating the sickest people over and over, not in keeping them from getting sick.”

“Incentives based on data are just another cost in a system that can’t absorb new ones.”

“Why would anyone in healthcare want to help you compete with them?”

“How will you make money?”

“Pick a narrow use case.”

“The tech doesn’t yet exist to secure all that data while still making it sharable by the general public.”

“Doctors aren’t smart enough to use this — what makes you think patients are?”

Overwhelmingly, though, something odd happened. I realized I was on to something — even though I was rejected dozens of times by high level investors, industry associations, researchers, technology experts, advocates, and those advocating for change in healthcare — they all still took my calls. I might not be able to raise the funding yet, but I’d be able to interact with potential collaborators and consulting clients the more open I was about it.

I kept the website going for a while. I wrote a white paper about how Metronome would work and I developed a roadmap for developing it as an open source product. I got more patient because I realized the world wasn’t yet ready for Metronome, but that the conversations around it were making me a better innovator and consultant, and would potentially prepare me to develop a product when the time was right.

As a result, through Metronome, I’ve had hundreds of conversations with people like physicians, direct primary care thought leaders, behavioral economists, quantified self enthusiasts, tech executives and entrepreneurs, economists, industry associations, EHR and healthcare IT developers, hackers, privacy advocates, participatory medicine leaders, payers, insurers, legal experts, liability experts, delivery of care innovators, and consultants. These conversations actually informed Metronome evolution through three phases:

1. Technology Based — the original naïve idea was that if we could just cobble together a platform of the best-in-class sensors, data tools, and security features under a unified user experience, wonderful things would happen once we opened that platform up for others. The unfortunate reality I discovered was that technology can often be used to protect one stakeholder from another. A doctor doesn’t really want an insurer to be second-guessing every decision they make, an insurer wants to manage costs simply and not create variable reimbursement based on outcomes unless they really have to. Patients don’t want their data sold to people they don’t know — rightly so — since healthcare has emerged as one of the worst industries for data breaches.
2. Alignment Based — the second wave was in seeing that the economic and social incentives that drive providers, patients, payers and the regulators, pharma, device, and service providers, are not aligned. They work at cross-purposes. I began seeing Metronome as an incentives-based marketplace to allow money and resources to flow to where it would create the most value for all. Coordination of care, and involving caregivers and social influencers, became more important to the model. The workflow of data, blockchain and the ideas of smart contracts and marketplaces for being rewarded for healthier behaviors emerged as important elements or considerations. The situational distinctions between secret, private, anonymized, and validated data became clearer. Scale, though, became a concern. How would we build something so massive when the stakes were so high?
3. Trust Based — the current phase of Metronome thinking is all about building the trust to do something so audacious — not just a veneer of trust, but demonstrable trust that in using it, all parties are happier, healthier, and keep more of the wealth that’s currently going into the non-stop expansion of healthcare bloat. This is about serving a small group of patients and providers and caregivers and payers with a trial use case that we can build on. A first use case emerged — women who were attempting to conceive, pregnant or post-partum. This presented a defined episode in which to (hopefully) positively affect health, costs, and quality of life, measure the impact objectively, and allow us iterate on that. The technological tools and paradigms that enable Metronome are catching up; maybe soon the time will be right to scale it up in a humanly approachable way.

Five years ago, the Tricorder XPRIZE launched with a vision of using technology to make us all better. In April of 2017, Final Frontier Medical Devices won $2.5 million for putting proprietary sensors together with a proprietary app. It’s admirable and the prize is well earned, but there is still no incentive for the data or risk-bearing sides of healthcare to interact with it. There’s also no daily motivation for the average person to use it — critical for long term usage — only the long-term benefits.

If my experience is any indication, we still have a way to go. What Final Frontier Medical Devices did is the starting point for a system that uses data to align us all and build trust. Trust, unfortunately, is earned rather than created out of thin air.

Technology in healthcare seems to trump care, though, today. Doctors and providers are incentivized to spend our healthcare dollars on technology in ways that don’t always make sense.

In hindsight, my own healthcare journey points to where we are today. The system has replaced the risk of me being hospitalized for weeks at a time at a cost of tens of thousands of dollars with an implanted device and far fewer doctor visits. For a long period of time, I was uninsurable except in an existing group or through a catastrophic plan with massive deductibles. The understanding of what’s wrong with my heart has gone from seeing idiopathic symptoms, to a disease model, to a genetic model. Millions of dollars were invested in developing a device inside my body that insurers pay tens of thousands of dollars to implant and monitor.

Technology in healthcare seems to trump care, though, today. Doctors and providers are incentivized to spend our healthcare dollars on technology in ways that don’t always make sense. I hurt my knee once, and the orthopedic surgeon was all about an ordering an MRI and planning surgery until I told him about my implanted device. He stopped — when you have a chunk of implanted metal and circuitry in your chest, you’re warned that the powerful magnets of an MRI machine can kill you, It seemed like just as the consult was getting started, it ended. He fished an old sheet of knee strengthening exercises out of a file drawer and said, “do these daily and if it doesn’t get better, call me.” He was convinced I needed thousands of dollars of imaging and surgery, yet once he found out he couldn’t order it, he never even wanted me to come back for a follow-up visit. I never needed any more than those exercises, yet we were all going to pay a lot more for treating me. How many people will we collectively pay for getting that MRI and surgery when it might be as unnecessary as it was for me?

I’ve started to feel like I’m a chit for those who need my ICD code so they can get paid.

This points to the limitation with technology in healthcare in my experience. Even though my heart condition is chronic and my heart is gradually getting less effective, through some kind of fluke in how the condition has progressed, my device rarely intervenes since I had it implanted years ago. I now have middle age problems like weight gain and higher blood pressure. If I tell my cardiologist about that and ask what to do about my energy level and blood pressure, he shrugs and reminds me he’s an electrophysiologist, that my device is working perfectly, and that questions like that should be directed at my internist. His economic and professional interests don’t align with my quality of life ones, and rarely does an encounter with him, the company that made my device, or the system as a whole actually help me know what to do to have the most energy, the best quality of life or reduce the risk of future problems. I’ve started to feel like I’m a chit for those who need my ICD code so they can get paid.

What I want is someone or something to help me make choices on diet, activity and the attitudes and beliefs that guide me. Technology is literally embedded in me, yet I don’t trust that the people that designed it, made it, put it in me and pore over the data it generates really care about my daily life.

I want tech that guides me to better choices, more self-awareness, better health and more quality of life. I think we all do. To get there, though, our tech should act as a scalable medium for collaboration around a shared purpose, not a substitute for it.

It seems an aligned, sustainable and trusted system that makes sense of all of we know about ourselves and others — and makes it actionable — is still a dream, a solution waiting to emerge once we’re ready to embrace it.

Five years in, I still want something like Metronome to emerge and succeed, but I guess I’ll have to be patient.

Dan Reus is an innovation facilitator and consultant in the US. He’s on Twitter at https://twitter.com/DanReus and LinkedIn at https://www.linkedin.com/in/danreus/ .