So where is your EHI (Electronic Health Information)?
(Part of the Health Care Revolution Series - TJS Consulting)
If you are like me (and most other people in the United States) over the last couple of decades I have had a variety of health plans, visited a variety of medical offices and specialists, an emergency room visit for a surfing accident, an urgent care visit for a volleyball twisted ankle and a prescription or two somewhere. Each of these visits or services are carefully recorded in the Electronic Medical Record (EMR) for that specific providers practice where they’re kept safe and sound. The challenge I, and so many others face is there are pieces of my EHI — pieces of me— scattered all over San Diego County in a number of different EMR databases. There is no one EMR for me as a whole person. Of course, I have every right to gather it up, in fact the department of Health and Human Services (HHS) is kind enough to provide forms on their website for us average Joes to gather up our EMRs, but where would I store it? Google drive? I think not. How is a provider I pick based on next year's plan going to know about me and what is best for me other than the reams of paper I fill out online or in the waiting room before a visit.
The government has been worried about this very issue for some time. In 2004, the Office of the National Coordinator for Health Information Technology (ONC) under the HHS (Health and Human Services) was established to “develop or support a trusted exchange framework, including a common agreement [TEFCA] among health information networks nationally.⁽²⁾ According to the HHS you own it this information. It is yours and can only be shared with your authorization. That’s great but, where is it?
The 21st Century Cures Act 2016 required that certified health providers have the technology to provide Electronic Health Information (EHI) as an API (easy way to bridge data) with standardized data elements “without special effort”. In 2020, the ONC established new rules around patient access and having the right to the information at no cost. They also addressed data fragmentation by establishing the United States Care Data for Interoperability Office (USCDI). You can check it out on HealthIT.gov (if you are into that sort of thing) and they provide the data standards for a variety of health providers to make it easier for information to be shared across platforms. It is designed to empower patients with healthcare choices and help providers make better decisions with more information about you and your health. Additionally, the vision is that in 2022 “push button” population health information will be available because of these standardized API’s.⁽⁸⁾ Informational power (or the lack there of) has been highlighted during the pandemic, leaving us with more urgency to counteract this persistent data fragmentation problem. For example, the CDC at the height of the COVID pandemic had access to only 5% of possible underlying conditions that affected COVID patients and the associated risks. This lack of integrated health information handcuffed the CDC, keeping them from providing robust guidelines to providers about high risk patients.
To make matters more complex, there is a new consideration to all this data— the Internet of Medical Things (IoMT). You may have heard of the Internet of Things (IoT)— it refers to all things that digitally interact with us.⁽³⁾ˤ Phones, tablets, clouds, apps, games and so on. Well, along with this, there is a slew of medical information out there being generated from smart watches, cell phones, searches, fit bits, apps, etc. The question is how does this data— which is invaluable to understanding you and your optimal health— fit into the EHI or at all. The reality is there is no governance around the IoMT data. It is out there in the data universe with very little protection for privacy normally afforded to EHI. According to Dr Don Brown, the founder and CEO of LifeOmic, there are hundreds of gigabytes of data to gather for just one patient. This is why his organization created a cloud based platform to store it.⁽¹⁾ But wait, there is even more to ponder here. As this IoMT evolves, the digital divide between those with access to technology and those without will deepen and exacerbate healthcare inequity as there now is a cost barrier that can keep smart devices from generating critical health data.⁽⁴⁾⁽⁵⁾ The paradox is that data is the secret to closing the healthcare inequity gap but also potentially could be the cause to deepening it.
So what if there is no central repository for the EHI— well it costs all of us a lot of money, and limits the ability of the healthcare system to serve our personal healthcare needs optimally. It is foundational to precision medicine. Not using and accessing all the potential data about YOU limits a provider in using technology to derive the best treatments and even causes potential delays in critical treatment that may be life saving. Another looming crisis is the shortage of healthcare professionals, by 2034 up to 122k shortage of physicians⁽¹¹⁾ and we are already at a tipping point in nursing shortages. The efficiency and accuracy gains that could be leveraged by technology if we had a cohesive integrated health information system would ensure we ride the crisis out positively.
According to an article in The New York Times by Aaron A Carroll and Austin Frakt, it is our fault.⁽⁶⁾ We in the US value choice over safety and it is a plethora of choices that drives the data fragmentation and administrative costs (~$300 Billion per year, about ⅓ of total healthcare spend). The solution is not easy as no one insurer can govern— “it’s a collective action problem”. They say. In addition, “overall, 32 percent of individuals who went to a doctor in the past 12 months reported experiencing a gap in information exchange” according to the Office of the National Coordinator for Health Information Technology.⁽⁷⁾ This means duplicative blood test, x-rays or basic health information. So much waste!
Despite having per capita medical spending way above any of the other wealthy countries, the health outcomes in the US ranks 11th according to Horus Alas, US News.⁽⁹⁾ The top 3 are Norway, Netherlands, and Australia based on The Commonwealth Fund Study.
I looked at what the Top 3 countries for health care were doing with EHI. All three have centralized government repositories for the EHI for their citizens. It is not without its challenges though, as manual updating and the quality of data is still a hindrance. Norway has a Norwegian National Summary Care Record, it is considered by providers to be very helpful when looking at prescription records, but less trustworthy for other medical information as it is dependent on manual updating by providers at point of care. The Netherlands and Nordic states are the gold standard in eHealth. However, they “ ..continue to grapple with many of the challenges seen in other regions around the globe, from the lack of funding or political direction to poor interoperability.”⁽¹º⁾
Australian Digital Health Agency in 2021 announced they have completed the last lap for integration of the EMRs in Southern Australia. This offers a unified view of a patient's interactions with the health systems and gives patients “personalized care with better outcomes.”
I thought I would share this graph from 2019— Australia has clearly sprinted over the last 2 years to be on par with Netherlands and Norway in shared EMRs.
My goal in this article is to plant some seeds, and share what I learned on my fact finding mission to find my digital self. In the US, 80% of the population know that a Healthcare revolution is needed. We are clearly part of the problem. By looking at the world's leading countries in health outcomes, perhaps we should lean towards the Dept of Health and Human Services owning and securing our digital selves, the benefits to our well being would far outweigh the risks of "loss of freedom". After all, our financial tax information is stored by the IRS— is this any different? We have some general elections looming and this is probably one of the most critical issues that impacts our pockets and our health if strides are not made to make it right. We have power in our vote and voice. For us and our children's sake, we cannot continue to waste time. The shortage of clinicians is going to worsen over the next decade, using data, smart AI, and average Joes engaging in the digital platforms will help us ride this new era out happier, healthier and wealthier.
Please let me know your thoughts!
Here are some of the references I used:
3- The Impact of IoT in Healthcare: Global Technological Change & The Roadmap to a Networked Architecture in Indiahttps://link.springer.com/article/10.1007/s41745-020-00208-y#auth-Satya_Prakash-Dash
4-Insights on the Internet of Medical Things (IoMT) Market to 2028 | International Key Company’s - GE, Siemens, Medtronic, Honeywell, Philips, AliveCor, Meru Health 10-20-2021 03:16 PM CET | Health&Medicinehttps://www.openpr.com/news/2435259/insights-on-the-internet-of-medical-things-iomt-market-to-2028
5- Covid-19 is magnifying the digital dividehttps://laptrinhx.com/news/covid-19-is-magnifying-the-digital-divide-pGZbpeA/amp/
6- Which Country Has the Best Health Care System?https://www.nytimes.com/2017/09/27/upshot/which-country-has-the-best-health-care-system-readers-respond.html?.?mc=aud_dev&ad-keywords=auddevgate&gclid=CjwKCAjwn8SLBhAyEiwAHNTJbaLLF8KxBrgau01xpU-oJBUpDKmT60IRtdjdS26gH2O0QvH7VhtU6xoC7c0QAvD_BwE&gclsrc=aw.ds
7- Office of the National Coordinator for Health Information Technology. 'Gaps in Individuals' Information Exchange,' Health IT Quick-Stat #56. https://www.healthit.gov/data/quickstats/gaps-individuals-information-exchange. June 2019
8- Push Button Population Health: The SMART/HL7 FHIR Bulk Data Access Application programming Interface Https://www.healthit.gov/isa/united-states-core-data-interoperability-ucsd 9- U.S. Last Among 11 Wealthy Countries For Health Care, Study Says https://www.usnews.com/news/best-countries/articles/2021-08-09/us-ranks-last-among-11-wealthy-nations-for-health-care-study-says 10- Estonia, the Netherlands & Nordics continue to drive eHealth adoption and use in Europe, study https://www.healthcareitnews.com/news/emea/estonia-netherlands-nordics-continue-drive-ehealth-adoption-and-use-europe-study-finds 11- AAMC Report Reinforces Mounting Physician Shortage, June 11th 2021 https://www.aamc.org/news-insights/press-releases/aamc-report-reinforces-mounting-physician-shortage