THE CASE FOR PATIENT-OWNED ELECTRONIC HEALTH RECORDS AND ELECTRONIC MEDICAL RECORDS (EMR) INTEROPERABILITY AND SHARING ACROSS HEALTH SYSTEMS

We need a decentralized electronic medical records system in the U.S., as France has had for a good while now [Related article: https://www.forbes.com/sites/zinamoukheiber/2010/11/23/france-is-so-ahead-of-us-in-electronic-health-records/]. We are way behind the curve. We need to make this happen.

The major hospitals and health systems have resisted sharing individual patients' electronic medical records (EMRs) for competitive reasons [i.e. viewing patients EMRs as proprietary data and/or as some type of asset owned by them]. As someone who has worked in hospitals for 10 years in cardiac diagnostic services [i.e. primarily echocardiography], I had to fax paper records to another hospital or Doctor's office -- very inefficient. One time I was asked to fax over a 30 page treadmill stress test [i.e. with ECG tracings through the Bruce Protocol], which is insane and so inefficient. The hospital had no way to email a PDF; HIPPA laws make a lot of this difficult or impossible.

I believe that patients should own their health information and EMRs. Hospitals make it overly difficult for patients to obtain their medical records, although some hospital information systems (HIMs) such as Epic used by major hospital systems like NYU Langone are making this a bit more accessible. But, we still have a long way to go.

When EMRs started in the beginning the U.S. Federal Government gave billions of dollars in subsidies [i.e. through the Health Information Technology for Economic and Clinical Health (HITECH) Act] to hospitals and Doctor's offices to purchase EMRs [Related article: https://www.commonwealthfund.org/publications/newsletter-article/federal-government-has-put-billions-promoting-electronic-health]. The problem is, everyone and their brother got into this market and developed their own related applications and sold them to providers. But from the get-go a common or universal communication protocol to be used between these systems was not developed or adopted by the software providers. Big mistake!! So, in essence they did not have the capability to communicate with each other and share patient data electronically, one of the key initial selling points to adopt EMR to begin with. It boggles the mind that this was allowed to happen.

Things have progressed with Health Information Exchange (HIE) and HL7 [related link: https://www.himss.org/resources/interoperability-healthcare#], but we are still very far from having universal and around 80-90% penetration rate of interoperability between disparate health information systems (HISs). This will probably take at least another decade to achieve.

Finally the Centers for Medicare & Medicaid Services (CMS) have stepped in with their authority and have enacted the "21st Century Cures Act" and Executive Order 13813 which mandates health provides to share patients' health data [Related link: https://www.federalregister.gov/documents/2020/05/01/2020-05050/medicare-and-medicaid-programs-patient-protection-and-affordable-care-act-interoperability-and]. But much work remains to enable providers to accomplish all of this; it's a major mess to clean up due to the aforementioned problems of a lack of inter-communications standards. Basically providers either need to pay programmers to modify their EMRs to enable the electronic intercommunications of electronic health data or purchase entirely new systems which are certified for and are capable of supporting the intercommunication standards [i.e. HL7]. So much of this solution revolves around financing these capabilities. In this is not cheap by any means. We either need to adapt our ship or buy a whole other new ship. This is the issue we are confronted with.

KEY TAKEAWAYS from the 21st Century Cures Act:

"This final rule is the first phase of policies centrally focused on advancing interoperability and patient access to health information using the authority available to the Centers for Medicare & Medicaid Services (CMS). We believe this is an important step in advancing interoperability, putting patients at the center of their health care, and ensuring they have access to their health information."

"We are dedicated to enhancing and protecting the health and well-being of all Americans. One critical issue in the U.S. health care system is that people cannot easily access their health information in interoperable forms. Patients and the health care providers caring for them are often presented with an incomplete picture of their health and care as pieces of their information are stored in various, unconnected systems and do not accompany the patient to every care setting. Although more than 95 percent of hospitals and 75 percent of office-based clinicians are utilizing certified health IT, challenges remain in creating a comprehensive, longitudinal view of a patient's health history. This siloed nature of health care data prevents physicians, pharmaceutical companies, manufacturers, and payers from accessing and interpreting important data sets, instead, encouraging each group to make decisions based upon a part of the information rather than the whole. Without an enforced standard of interoperability, data exchanges are often complicated and time-consuming."

It's very surprising we don't here more political leaders speaking about this issue, given that it impacts us all in profound ways. We need to create more urgency, focus, and advocacy for and behind this issue to make it happen. So I applaud those working to support universal electronic health record exchange and health data interoperability between systems.

I highlighted this issue in 2012 as one of the key ways to improve our U.S. healthcare system in a?guest post on mHealthTalk - A Totally New Healthcare System, Link: https://www.mhealthtalk.com/new-healthcare-system/

RELATED SECTION FROM ARTICLE CITED ABOVE:

"Electronic Medical Records

Now, I believe that all these types of healthcare delivery entities are valid, needed, and can succeed, but with an infrastructure that links them. And that infrastructure is a universal healthcare information records system that can bring the information together amongst these entities in a seamless, efficient, standardized and effective manner. I think a big part of the gap lies in information. And as much we need to find better ways to get the information to the patients. I think we need to re-look at HIPPA and find a way to keep patient’s health records secure, while allowing patients easier access to the information they need. I see growing frustration amongst patients and their families over how difficult it is to get a simple report. I feel they should have this information with ease, they paid for it, it’s is theirs.

One idea is a central secure healthcare records account (saved on a secure server at a certified Healthcare records server farm) accessible online by private entities which conform to uniform federal standards. For each test (be it heart catherization, blood work, CT, etc.), the healthcare establishment would be required to send all test results to this account in the proper format so the patient and her physician (or whomever has permission) can access it. Let’s get rid of this “testing black hole” in healthcare. I feel that the patient has the right to own this information. Just as we have the right to our tax documents, investment reports, utility bills, and property tax assessments."

OTHER RELATED ARTICLES:

"4 Reasons Why EHR Interoperability is a Mess (and How to Fix It)"

Link: https://lyniate.com/blog/reasons-ehr-interoperability-is-a-mess-and-how-to-fix-it/

"Top 5 Challenges with Healthcare Interoperability (& How to Solve Them)"

Link: https://www.healthjump.com/blog/5-challenges-with-healthcare-interoperability

"Healthcare Interoperability Woes: Three Solutions that Create Optimism"

Link: https://www.technologynetworks.com/informatics/articles/healthcare-interoperability-woes-three-solutions-that-create-optimism-310622