The First Lines of Code: Fixing Healthcare from the Inside Out
Into the Canyon
As you ascend towards the top of the South rim of Grand Canyon on the Bright Angel trail, you pass through two arches. After spending time in the throws of the canyon, the arches signal a return to reality, civilization and connectivity. My dad always refers to the space between the arches as “the birth canal.” Some trips are harder than others — encountering things like almost getting struck by lightning, catching pneumonia, or runaway mules on the trail. When spirits are low, my dad will even tell creation stories — sharing a little more magic before you ascend to a very busy real world.
In October of 2019, I quietly stepped down as the Director of Digital Service at HHS/CMS. It was a role that had given me the opportunity to lead a team that would help shape the future of healthcare, and also a role that had become my identity.
Anticipating a wave of grief and emotion, I knew the only place I wanted to both reflect and think more about my future was the Grand Canyon.
No one had prepared me for the number of times that imposter syndrome would wax and wane during the course of my journey at the Digital Service. Leaving quietly heightened that feeling. A grumpy, brilliant guy once said, “The bureaucracy does not care about you.” And as I was slowly fading into the distance, the weight of those words sat heavily on my chest. For three and a half years I had given every ounce of energy I had to my job and the mission that had called me to DC from the desert — building a government that serves the American people.
Hours of hiking and quiet nights with only the sounds of a few canyon creatures and the rushing water of the Colorado River helped me unpack what had happened in the last few years. What the team had encountered, what we accomplished and what it meant in the context of our mission.
Signing On
I had no clue what I was actually signing up for when I said yes to taking on the Director role. Which was probably by design. No one in their right mind would say yes if they really knew.
I quickly learned that trial by fire is the only way to get up to speed.
In my first three months there were:
- Responding to a major security incident (which turned out to not actually be an incident at all)
- Launching the largest reform effort in Medicare’s history, The Quality Payment Program alongside our CMS colleagues
- Transitioning the Digital Service team out of a project that consumed every essence of our identity
- And quickly losing a large portion of that team who, like the Director before me, had been there much longer than anyone initially intended
Soon after getting my bearings the team embarked on a new path — exploring the power of CMS in the context of technology stifling or driving our future health system. In March of 2017 alongside the Office of Enterprise Data and Analytics, we launched our first new project, Blue Button 2.0. Bigger than just the product we built, Blue Button put in motion a new approach to data sharing in healthcare and established the foundation for CMS to share more timely information using modern technology and the FHIR (Fast Healthcare Interoperability Resource) standard. Industry was dragging it’s feet to share data, citing every excuse imaginable and taking the wheel to drive the revolution or the “data quake” was our only option.
A New Path
With standards based APIs as the new foundation for data sharing at CMS and across healthcare, research into what our future health system needs commenced. We traveled to numerous cities to meet with patients, providers, startups, health systems, venture capital, and private equity. We hosted round tables and spent hours sticky noting and white boarding, identifying what kinds of products should be put in motion. A policy and technical implementation agenda emerged, and together these two parts formed a powerful whole that ignited enthusiasm, moved CMS into position as a leader in health technology and began to move an entire industry forward.
We had learned that industry was stalled and that without CMS taking charge the future that many leaders talked about as their vision would not actually become reality. Every conversation we would hear the same type of sentiments, “we can’t adopt value based payment models or the tech to support them at scale until CMS does,” or “we won’t share our data until we are told we have to.”
And through those conversations two key themes guided our path forward:
- Doctors need real time access to data that matters in a way that is usable to make decisions.
- Value based care built on a Fee For Service chassis will always limit the outcomes we can expect to see. And those limitations are mostly imposed by systems and technology.
What We Accomplished
In 2019 our team launched Data at the Point of Care, the first bulk claims data API for providers, allowing all Medicare providers to receive claims data for their Medicare patient population. On the other end of the systems and data pipeline, the Digital Service team was busy working with CMS to move a system that process $500 billion in payments a year, made up of 13 million lines of COBOL on the mainframe, with an 8–12 month cycle for introducing major changes or bug fixes to the cloud. Modern infrastructure is a necessity in a health system that pays for value.
On top of the hands on keyboard work, the Digital Service team was assisting CMS in identifying what an agency that prioritizes technology and successful implementation would need. This included helping hire technical talent, proliferating modern software development practices and tools, pushing for security over compliance, and developing a deep understanding across the agency of how decisions impact intended end users — not just the middlemen that run rampant in healthcare — but care teams, patients and their families.
In government it is rare that technical expertise is a part of policy conversations. Living in a world where technology underpins every aspect of our lives, the implementation of every policy will rely on technology or have a technical implication. The Digital Service team at CMS started the journey with policy within the Quality Payment Program. From user testing of the program name to eventually releasing the first wireframes along side policy in the Federal Register, the team was one of the first in the country to incorporate user research and technical expertise into the policy making process. Our policy work didn’t end there, CMS policy teams across the agency opened their doors and let us assist on regulation after regulation. We provided feedback and suggestions on what implementation of policies might look like and technical requirements that would bring their vision to reality. We bridged a gap between policy and tech in a way that had never been done at CMS or really any government agency before.
We spent countless days facilitating conversations, thinking through how you engage with users — something that might seem simple if you don’t know what the Paperwork Reduction Act is. Our skilled team not only came with technical expertise but the ability to navigate complex bureaucracy.
We worked with CMS to develop new ways to procure services and products — building, testing and iterating on what works when agile development meets the Federal Acquisition Regulation. Procurement strategy became a success criteria for the projects we took on. We were shaping not only the procurements for projects we worked on but sitting in on other Technical Evaluation Panels, reviewing and writing Statements of Objectives and working with willing Contracting staff to share new ways of approaching problems.
We helped the CISOs office think through ensuring the security of CMS systems and data, including awarding the first true Bug Bounty contract at HHS. Someone on the team was always the voice in the back of the room reminding everyone, “compliance is not security!” We assisted in responding to incidents, supporting our CMS colleagues as they faced hard challenges. We took lessons learned from those incidents and shared them in hopes of shaping a new future for Incident Management at CMS.
Building the Team
And while the team shrunk down to five people at our lowest, it was back up to over 25 on the day that I left. The time when we were only five people was the hardest for me as a leader and for our team. I was constantly making contingency plans while trying to embody the hope that our already burned out team needed. We were stretched too thin across too many projects all ready to burst at any moment. Based on the frequency of our 10 or 11pm phone calls and texts, I don’t think any of us slept much.
One Friday I got a phone call from someone on the team who suggested we shut down all projects except one. I felt like I had failed as a leader and would fail to deliver on the promises I had made across the agency.
That weekend, on giant sticky pads running across the wall in my bedroom I mapped out the next three months, marking when I thought new people would come. And in January, the month where I was worried it would potentially be *only me* left, I wrote a big circle with the words “nuclear option” next to them.
I called an emergency team meeting the next Monday and reminded everyone why we were here. I attempted to reassure fears even though I was full of them myself. We just needed to hang on. We had to be hopeful and scrappy enough to find a way. We survived this far, through threats of an administration change and threats of budget and resource cuts. We did it while some of our major support systems doubted us and sometimes worked against us.
And then new people showed up. We breathed collective sighs of relief as new faces were in the tiny conference room that we called our HQ. When I started getting frustrated phone calls and emails asking why my team was squatting in other peoples offices, I knew we made it. We had outgrown the tiny conference room.
My proudest moment was sitting in our last “onsite offsite” and looking around at all the faces at the table. Brilliant individuals who left their other jobs to be part of the team at CMS because they believed in our mission, the runway we had to make a difference and a future where healthcare could really work for patients and providers. The work was personal — everyone on the team had a story of their own experience with the system, or through their children or their parents. They brought empathy and combined it with raw talent and skill to push through the most difficult days just trying to make a small difference.
The projects we worked on constantly reminded me that while thousands of companies are playing buzzword bingo with their latest solution for healthcare, the basic improvements that we actually need are still years behind. If we don’t address them, we can’t move forward. And addressing them is exactly what our team has started to do.
Days of reflecting in the canyon allowed me to see that the people are what matter most — the ones we serve and the ones who show up to do the work. And crossing through the “birth canal” after my last night sleeping near the Colorado River, I was unpacking not just what we had done but what would come in the future. My dad was just in front of me on the trail, quiet this time. No creation stories, just the occasional, “you ok Shannie?” with a quick stop to catch our breaths.
There are two things that we can count on to make us feel small, the vastness of our natural environment and being in huge groups of people. Standing at the bottom the Grand Canyon, gazing from river to rim, seeing ecosystems that only exist below the Kaibab formation, cliff dwellings where thousands of years ago people lived, I always feel like a single spec of dust in a massive desert.
And when I emerged from the last switchback at the top of the canyon I was met with the other — something I surprisingly hadn’t seen there before — thousands of people. I threw my pack on the ground and started crying. I was overwhelmed and exhausted while simultaneously healed and ready for what would come next. It was the perfect ending to my nearly four years at the United States Digital Service.
What’s Next
If you are out looking for a way to make healthcare better, come to the source. CMS is the heart of American healthcare and it needs help. The Digital Service team is always hiring and so is CMS. Your country needs you.
As for me, I kept searching for something that would excite me as much as the work I was doing at CMS. While opportunities crossed my path, none felt as impactful. And so coming out of the canyon was a different kind of rebirth this trip. It was a recognition that while I was ready to move on from the Digital Service role, I was not ready to move on from CMS or Federal Service.
Starting next week, I will be continuing my work at CMS as the Chief Technology Officer at CMMI, a team that I am beyond thrilled to join!
