We all have stories about what motivates us. For those of us in healthcare, it is often the experiences of friends and family from our own lives that supply the “why.” One of my motivators is the young family friend “Evan” who was diagnosed with a rare form of cancer during the summer between his first and second years of college. Fortunately for Evan, he was able to connect with, and have his care managed by, one of the world’s experts on his condition. But Evan wanted to receive care close to his home, and his care manager practiced hundreds of miles away.

Evan’s story turned out well – 10 years on, he is cancer free. But I continue to keep his story fresh in my mind, because it highlights several of the challenges we are still addressing as an industry. Among them that:

• Information sharing is essential. Evan’s care was managed remotely and delivered locally, but that meant that every checkpoint quite literally required shipping data on disks to his care manager. Interoperability has improved since then, and patient-mediated data exchange is much easier than it was. Yet we still have a long way to go. A good deal of information sharing is still document-based and not easy to parse. The FHIR standard, which allows API-based data sharing, is still young, and has yet to cover all types of health information – to say nothing of the new types of data being created all the time. 

Not surprisingly, when we speak with digital health solution developers looking for help with their technology stack, often one of their highest priorities is creating connections between their solution, and the rest of the health ecosystem in which they operate. Many are looking to scale rapidly on a tight budget, which is why InterSystems makes it a priority to deliver not only great technical integration, but the lowest total cost of ownership at scale for digital health solutions. 

Yet I’m also shocked that many of the start-ups with whom I speak are so excited about the unique perspective and capabilities they are trying to bring to market, they fail to recognize the need for information sharing, or see it as something they can address eventually. Some of these young businesses will survive, but many will not. In a fiercely competitive market, there is no room for siloed health solutions. And patients like Evan cannot afford them.

• We need to make it easier to learn about, and improve care for, rare diseases. Evan benefitted from the experience of an expert who had managed to assemble enough data to help him rewrite the playbook for one type of cancer. But there is too little shared information for most rare diseases. One friend, who lost a beloved grandchild to such a condition, told me her daughter had to crowd source much of the information she needed for her child’s care from an internet-based parent support group. 

We have the technology needed to create comprehensive longitudinal records. Organizations like Manifest MedEx in California, Healthix in New York City, and Cync Health in Nebraska have created health data utilities (HDUs) to serve up the information for 10’s of millions of patients, sourced from the entire health and care network in their regions, to support safer more collaborative care. They have a rich diversity of data on all kinds of people, as well as all kinds of conditions. That same data, and that same technology, needs to be used to create natural history of disease registries. And it needs to be turned toward the support of observational research and fact finding to make the concept of a learning health system a reality for the benefit of future patients.

• Location shouldn’t limit access to the world-class expertise. Evan’s family had the knowledge to seek out the best care, and the wherewithal to get it. Yet even in the US, access to care is limited and specialists are concentrated in urban areas. In less wealthy countries and regions, specialty care may be completely unobtainable. The growth in digitally enabled virtual-first care (V1C) models like Heartbeat Health make it not only more cost effective to provide specialty care but make care more accessible. V1C is seen as particularly promising for mental and behavioral health. Yet there is still a zero-sum game problem. We may be able to make care available across a wide range of geographies with virtual visits, but that doesn’t actually expand the number of caregivers. 

To extend our care resources, we need to better harness all that data we have connected across the ecosystem, and built into comprehensive, longitudinal records, with emerging AI technologies. This will enable us to reduce administrative burden, enhance access to the world’s expertise, and maybe even automate some of the work of care. While generative AI is near the top of what Gartner calls the “hype cycle,” the promise it offers is amazing and it is exciting to be working with so many creative minds making that promise reality.

How do your life experiences motivate and inspire you? Mine make me want to be part of creating a health system where time and place pose no barriers to care and where shared information helps us deliver better outcomes for all. 

Join us October 8-11 at HLTH 2023, the premier healthcare innovation event, where InterSystems will be showcasing our cutting-edge solutions and thought leadership. Visit our booth #4620 in the West Hall of the Las Vegas Convention Center to explore the Digital Health Showcase, featuring innovative startups and their solutions built on InterSystems technology. Don't miss our engaging sessions, including the Global Health Connector Summit and the Partner Programming with DiME, where you can learn about international healthcare opportunities, innovation partner programs, and the implementation of virtual first care. Interested in becoming a part of our partner or startup program? Visit our website to find out more about how you can collaborate with InterSystems and drive innovation in the healthcare industry. We look forward to connecting with you at HLTH and shaping the future of healthcare together!