Forever I have lived in the world as a patient, in which there was a lot of data about me moving around without me.
Too many organizations had my data and passed it around without my knowledge or explicit permission. However, when I needed data about myself, there was no simple way to access it completely and easily
To obtain my own data, I had to go from provider to provider, payer to payer and portal to portal, making phone calls and awaiting faxes and mails. I cannot imagine being a patient with multiple chronic conditions, visiting countless doctors, hospitals, labs and few payers over the years, trying to compile information for my next doctor’s visit, just so that the doctor gets a 360 degree view of my past conditions and treatments, all to simply devise a proper treatment plan.
But times are changing. Once fierce competitors working under HIPAA guidelines restricting information being shared with who/when/how are now coming together to share the information. For the first time in history, even the government agency is making a mandate to share information outside of the current HIPAA perimeter. This regulatory move is adding fuel to the fire (or should I say FHIR ☺) of sharing information. And most importantly, now the intent is to empower ME, the patient, to have total control over my data, to have the freedom to share with who/when/how as I see appropriate to seek better treatment.
ONC (Office of the National Coordinator for health information) and CMS (Center of Medicare and Medicaid Services) published a ruling on interoperability on 3/9/2020. Below is the timeline and excerpt of this ruling.
These regulatory and compliance rules for a patient means clinician or hospital cannot block access to my data and would have to make it easier for me to access it by providing access via third party App of my choice where I could see ALL of my data from various organizations in one place and eventually grant access to whomever, whenever I see appropriate. Times are truly changing!
Soon there will be peer pressure amongst organizations to move out of the experimental way and make strides in transforming healthcare where data is shared freely (yet responsibly) using Data Exchange(rather than on a portal) and not being concerned of privacy and HIPAA (the burden will be shifted outside of their perimeter). It will be a paradigm shift if (or should I say when) healthcare achieves this goal of providing coordinated care by managing the total cost of care (lower cost and higher value) to take care of the patient in optimized value based care.
I truly applaud ONC and CMS for making the “21st Century Cures Act” ruling and put out a timeline. Significant credit goes to years of efforts from projects like Da Vinci, Argonaut, CARIN alliance, HL7/FHIR, all healthcare and IT organizations to lay the foundation of seismic shift coming in healthcare!