Towards a public health utility for health information: How a band of standards driven IT geeks is reconfiguring the way healthcare does business

“Skate to where the puck is going, not to where it is.”        

Walter Gretzky (Wayne’s dad)

Currently, healthcare is a deeply unsettling experience for all of its key participants. Over the past 17 years I have had the opportunity to play loads of roles in healthcare. I’ve been a doctor, patient, parent, informaticist, entrepreneur (failed), payor (see parent), administrator, academic faculty member, student, physiatrist, fellowship director and solutions architect. During my travels, I have learned a lot about how healthcare is affecting the broad swath of people it touches.

Safe to say, it doesn’t appear to be working well for any of healthcare’s key stakeholders (Patient, Provider, Researcher, Payor). Paying the role of inquisitor, I've spent my professional life seeking healthcare experts out (including patients) and asking them loads of questions. Mostly focusing on these generally lines of inquiry:

Why is healthcare such a mess for everyone who needs it (patients) or works in it(providers)?

How have other industries fixed similar problems? 

Who is financially benefitting from this information boondoggle?

What can we do to rapidly and foundationally shift the way medicine does business?

Where is the health IT market headed in the next 1-5 years?

If you have ever asked the above questions and are looking for solutions that benefit the Many rather than the Few, then I'd recommend you keep reading.

One more key question hit me while driving into work this morning: "Who are the people that will use this next generation of standards healthIT tools to knock down the artificial walls and reclaim what is ours by birth?". It's a simple answer. It is you. And me. And the rest of us who have always stood up at the right time to demand a more rational, humane experience. This is the history of technology and how people have used tools to improve the fortunes for all the key stakeholders. When we solve the biggest problems, it's important that the water rises for all the boats. These value creation episodes are not rare in human history.

Healthcare desperately needs one right now.

Fortunately it appears that we are in one of those moment. There is an onslaught of health IT standards and open technology customer requirements popping up across the healthcare market. The rapid shift towards FHIR standard and the emergence BPM+ Health standard are incredibly encouraging. More so, requirements for these standards are now commonplace in major health IT purchases across the industry. These serve as a beacon and common goal that our industry is skating towards.

A generational shift in healthcare delivery is upon us ... and fortunately it's the medicine we need most right now.

This series of articles that will explore the first two epochs of health IT. It will detail our struggles in current 1.0 age of health IT (Care with Boundaries) and it’s serpentine villain (proprietary data models). We will then explore the emerging standards driven health IT market where patients finally are becoming first class citizens in healthcare (Care without Boundaries). Mostly, this series of articles will describe how a growing community of healthcare providers and technologists are working to knock down the boundaries of healthcare using highly scalable, open source technology. The unlikely timing of healthcare’s cloud migration and the ascent of two highly compatible standards (FHIR & BPM+ Health) is leading the market to the next age of healthIT (#hit2.0). We will also look at how the behemoths from the Care with Boundaries age of health IT are reacting. Spoiler … I can smell the fear from my dining room in Lakewood, Ohio.

Be the change ...

If you don't want to read anymore and just get started, meet us at the BPM+ Health site.

"Descend into the particulars"

I had the fortune of being educated by the Jesuits through high school and college. I even went so far as to get my BA in Philosophy degree from them. The Jesuits are experts applying an approach called Causistry to solve humanity's most complex and perplexing problems. It is wicked effective. If my hyperbole is a bit too much for you, I’d recommend you listen to Malcolm Gladwell’s embroidery on the subject. As with most challenging problems, we cannot simply dive into solutions. To borrow his phrase, this series of articles we will “descend into the particulars” on what’s wrong with our current health IT infrastructure. First, we need to pull apart, examine and study the issues. In the hope of a solution, casuistry tells we treat the problem set with an eye towards filleting it's every wrinkle open. As a good Midwesterner I must now say, sorry for length of the opus that follows. For it is only in a deep understanding of the problems and our paradigms that we find novel solutions. Mr. Gladwell of course says it better "the details are important".

3 maypole themes that consistently to the top of the dialogue

1)     Care with Boundaries: This initial digital age of transformation in healthcare feels so incomplete, underwhelming and is mostly burdensome.  Despite the transformational impacts of IT in our personal lives, our healthcare is still marked by a procession of impenetrable boundaries. It's cost is increasingly untenable. At the same time appear to be headed in the wrong direction in terms of quality.

2)      Care without Boundaries: The health IT marketspace is currently undergoing generational shift due to the broad standards movement (FHIR & BPM+ Health). Working together our open standards:source communities are freeing healthcare data from propriety data models and applying proven machine automation to deliver your healthcare, where you need it and when you need it. Care without Boundaries is no longer a technology problem.

3)      Legacy, 1.0 health interoperability systems are reaping huge market benefits by locking our critical healthcare data behind the walls their proprietary data models. By all measures it has been a brilliant business model. The majority our health IT interoperability framework was built using 1990’s technology.  The technology is outdated. The business model is ancient (pre-SaaS). Rather than helping patients cross over their boundaries, these systems are built to restrict and control access.

In this series of articles

I plan to explore a variety of topics a myriad of topics including a deep dive into the shared problems amongst the key actors in healthcare (Patient, Provider, Payor, Quality). 

• Dig into health ITs crippling inefficiency, inability to produce sustained public health improvements and why it makes those who use it regularly so unhappy.
• Shine a light on historical examples of how people in other industries have solved similarly complex issues using technology.  
• Consider the recent ONC report and explore how the current generation of health IT technologies impedes the patient journey by imposing boundaries on their data and processes. 
• Identify the most common healthcare boundaries today (proprietary data models, IT applications built with decades old technology)
• Meet the unlikely heroes (data and process standards) who are reshaping the art of the possible using machine automation inside cloud agnostic containers.  
• Admire the sublime beauty of the Theory of Constraints and see how it can be used to automate away the endless, meaningless IT tasks that impede the workflow of healthcare providers.
• Encourage you to join one of the current standards based health IT movements to help us rip down the boundaries that litter our personal healthcare journeys.
• Watch a group of passionate healthcare standards geeks build the nations first Public Health Utility for Health IT. By the people, for the people …

When medical decisions are made without the complete and relevant set of information

the health and well-being of the patient is what’s at stake. The way our nation delivers healthcare today simply cannot continue. Healthcare costs are souring, health care providers are increasingly burnt out from the onslaught of technology solutions that do not communicate and integrate between them. The current health IT ecosystem relies on human beings as to carry their health data and process between IT machines. It requires people, at their most vulnerable moments to captain their care. It requires healthcare providers and researchers to become data entry clerks, wasting precious time transportaing vital health IT data between IT machines.

Trainwreck at Montparnesse station in 1895 or the health IT 1.0 age?

 At the same time we look around our lives and witness the remarkable impact that information technology has had on every aspect of our lives. Planes don’t crash every day. Once lengthy and complex transactions (e.g. real estate) can now be executed in the latter part of an afternoon. Just yesterday, I stopped a thief in Michigan’s hinterlands from stealing my credit using only a text message. In the time it took me to write this, most national retails taken my order and delivered a years worth of toiletries to my family.  We hear of early warning detection systems for tsunami’s but have nothing like its kind for healthcare.

A journey into the deep, dark cave we call healthcare

 For those who need it most (Patients), it is a dark, uncomfortable and overly expensive journey where our personal story and goals seem unimportant to the machine of healthcare. We rightly feel like second class citizens in that our Providers are exhausted and overwhelmed by the ever increasing number of IT tools and mountains of data; yet have precious little information that can help the Patient in front of them on their personal journey toward health. For those pay for (Federal Government, Employers, Patients) and research ways to deliver effective population health, they find data that is foundationally disintegrated and too old to actually decrease risk across high risk cohorts. For those who build in it (Technology), we find a mess of wires around overly expensive proprietary data solutions that mandate one:one connections between legacy IT systems. This environment maps very poorly to the actual Patient level journey. 

Why is healthcare delivery so screwed up?

 Facts:

• Over the past 4 decades we have seen a 31X increase in U.S. per capita healthcare costs. Costs continue to rise at a rate more than double our cost of living. Yet we’ve seen no sustained positive impact in quality from the first generation of IT system. There is a very real financial cliff in healthcare’s future, but we somehow choose not to see it. The rise in our healthcare spending over time is unsustainable.
• Up to 80% of healthcare errors are caused communication breakdown as patients’ care transitions between care teams, hospital shifts and specialists. The first generation of Health IT products were built on 1980’s technology using proprietary data models that prohibit them from effectively integrating to support provider communications. In case you don’t think healthcare information blocking is a very real and very valuable approach to build an international business then check out this link.
• The Physician suicide rate is now double the general population and rising. Nurses are 130% more likely to commit suicide.  Burnout is increasing at 9% per year, yet the number of IT tasks and systems providers are required to use is ever increasing. While not wholly responsible, the burden of our increasingly disconnected health IT landscape is adding clearly adding to the problem.
• Kidney failure leads to a devastating lifetime cocktail of dialysis, healthcare costs and human suffering. Most dialysis patients never return to work. They spend their remaining days recovering from dialysis treatments and getting hospitalized for a parade of inevitable blood stream infections. Medicare alone spent $120B in 2018 and the rate is increasing at an unsustainable 6.5% annual clip. At the same time it is highly modifiable using diabetes education programs. At the highest risk moments, a bag of $100 IV fluid is very effective in keeping patients from crossing over to lifetime of dialysis. Yet we can’t make a dent in the overall population health trends because legacy health IT surveillance systems were built to focus on the organization billing for the care delivery episodes. They aren’t built to monitor and mitigate risk in the 99.999% of the time that we aren’t sitting in front of a Doctor.
• Effective population health requires rapid detection and mitigation of healthcare events to reduce both patient suffering and financial burdens. Yet our current risk detection systems are driven by claims data generated around 8 weeks after the healthcare events. That is an eternity to wait to learn about a patient with suicidal depression or whose kidneys are on the verge of dying and requiring lifelong dialysis.

• The health IT interoperability market is just shy of $4b and growing at a >9% rate year by year. These tools occupy the spaces in between medical professionals and hospitals IT system who help us along our personal healthcare journey. The majority of the leading middleware systems are built using 1990s IT and proprietary, information blocking data models. 

Some good news

The healthIT marketspace is undergoing a generational shift. There is an emerging broad market demand for standards driven (FHIR, BPM+ Health) compliant technology. This is occurring at the same time as with the massive shift of patient data from legacy client servers to cloud agnostic containers. Open standards process automation supports the ability to plug and play AI, CDS hooks and other clinical decision support tools directly into healthcare. While it may not be good for legacy health IT interoperability vendors, it certainly is good for all us patients. 

Up Next … the problem

Care with Boundaries Barbed wire growing in the Mojave desert

Followed quickly by … a solution

Care without Boundaries. Health IT standards geeks to the rescue Wildflowers growing in the Mojave Desert

So …

Stick around for the next few chapters. If they:

• Strike you positively, please react to them by sharing to your network.
• Inspire violent disagreement in the space between your ears, then let me know it in any way you see fit.
• Foment your desire to tear down the boundaries of healthIT using standards, then join us at BPM+ Health

 Onward

               #CarewithoutBoundaries = #fhir + #bpm

This is a picture of a Pygmy Donkey. It is here simply to make you happy. They have a way of doing that.

About the Author

Shane McNamee M.D. is a board certified Physical Medicine & Rehabilitation Physician (PM&R) and currently serves as the Chief Medical Information Officer at Perspecta. He is passionately dedicated to designing, building, and delivering tools that improve healthcare delivery across the Federal and Commercial landscape. He is a proponent of the next generation of Health IT that democratizes healthcare data & knowledge using open standards to drive better population health analytics for various use cases. His areas of expertise include health data interoperability, drug & vaccine adverse events, near real-time monitoring (e.g. quality, risk, etc.), and process re-engineering to reduce improve the current state of healthcare and IT.

Prior to joining Perspecta, Dr. McNamee served in the Department of Veterans Affairs in a variety of roles. He has spent years supporting the physical and psychological issues of severely combat-wounded and combat-exposed veterans. As a polytrauma rehabilitation physician, he specializes in the recovery of those with traumatic brain injury (TBI) and complex combat wounds. He led VA and DoD data interoperability success in the Joint Legacy Viewer, helping to connect patient information across the federal landscape. He is published in the fields of TBI, complex neurologic injuries, post-combat care, and polytrauma.

Dr. McNamee graduated as a Presidential Scholar from the Medical College of Ohio and completed residency in Physical Medicine & Rehabilitation at the Virginia Commonwealth University.

Caveat Emptor

The opinions and perspectives offered here are the authors alone.