Why Isn’t Health Data Available Where It’s Needed Including Public Health?

I often talk to patients who wonder why their healthcare data isn’t following them.  Many patients just assume that the healthcare interoperability problem has been solved and that the data from their doctor or a lab or imaging center is going to be shared between doctors, specialists, and whomever needs it in healthcare.  Plus, from a public health perspective they think this information is available to public health agencies as well.

Those of us in healthcare know this often isn’t the case.  Sharing is getting better, but there’s still a lot of room for improvement and a lot of great people working to improve it.  If you’re interested in learning more about this problem and the solutions for it, you’ll want to sign up for the DirectTrust Summit happening June 9-10, 2021 (Note: If you use the promo code HITToday21 you can get a discount on your registration).  Along with Micky Tripathi giving one of his first talks since becoming National Coordinator of Health IT at ONC, the event is a whose who of people in the health data exchange space.

In a pretty unique way, DirectTrust already released a number of On-Demand healthcare interoperability sessions in advanced of the conference.  I checked out the session “Addressing Public Health Data Interoperability: Lessons Learned from the Pandemic” by Ed Simcox, Chief Strategy Officer at LifeOmic and Former CTO of HHS, which was a great look into why Public Health data isn’t available where it’s needed.  In fact, he talks about the “Infodemic” which was first highlighted during SARS and was seen during COVID-19 as well.

What’s the cause of this Infodemic in Public Health?

Simcox pointed out in his presentation how the 10th amendment has made it difficult for HHS to be able to aggregate all the public health data in one place since much of the collection of that data was ceded to the states.  This has made it difficult for HHS to be able to access this data to use it for public health efforts.  However, he then shared that Congress has asked the CDC to collect and aggregate this data in multiple acts in 2006, 2013, 2019, and again in 2020.

Why hasn’t the CDC acted on this request from Congress? 

There are likely a lot of reasons, but one of the biggest challenges within HHS is the classic silo problem where each department within HHS has different funding, regulation, and requirements when it comes to the data they collect.  All of these silos make it difficult for HHS to take an enterprise approach to data when each area acts independently.

In Simcox’s presentation, he’s not without hope.  In fact, he suggests that health data liquidity is possible and would cost a fraction of the $1 billion of public health funding that was provided as part of the CARES act.  He suggests that HHS create a centralized Public Health Data Gateway that would facilitate the sharing of health information across all of healthcare.  This wouldn’t be a centralized data repository, but instead it would facilitate the exchange of information between systems as shown in this graphic.

The good news is that there are already widely adopted data standards out there to make this possible.  Simcox suggests that using FHIR and USCDI we could build this centralized data gateway that would eliminate the need for manual, duplicative reporting and would be a valuable resource for academia and researchers.  Anyone that’s had to complete a spreadsheet they had to share with HHS during COVID will appreciate the benefit of not having to manually report data.

It was great to learn from a former member of the government on why we have issues getting Public Health data to the right place.  Plus, it’s great that he’s not just pointing out the problem, but offering solutions to the problem.  It was a great preview of what’s going to be shared at the DirectTrust Summit next week.  I’ll be looking forward to more practical healthcare interoperability sessions at next week’s virtual event.

About the author

John Lynn

John Lynn is the Founder of HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

   

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