The good, the bad, and the hopeful in new interoperability plans from Washington

Claudia Williams, Manifest MedEx, Amazon


Robust exchange of health information is absolutely critical to improving health care quality and lowering costs. In the last few months, government leaders at the US Department of Health and Human Services (HHS) have advanced ambitious policies to make interoperability a reality. Overall, this is a great thing. However, there are places where DC regulators need help from the frontlines to understand what will really work. 

As California’s largest nonprofit health data network, Manifest MedEx has submitted comments and met with policymakers several times over the last few months to discuss these policies. We’ve weighed in with Administrator Seema Verma and National Coordinator Dr. Don Rucker. We’ve shared the progress and concerns of our network of over 400 California health organizations including hospitals, health plans, nurses, physicians and public health teams. 

With the comment periods now closed, here’s a high-level look at what lies ahead: 

CMS is leading on interoperability (good). Big new proposals from the Centers for Medicare and Medicaid Services (CMS) will set tough parameters for sharing health information. With a good prognosis to roll out in final form around HIMSS 2020, we’re excited to see requirements that health plans give patients access to their claims records via a standard set of APIs, so patients can connect their data to apps of their choosing. In addition, hospitals will be required to send admit, discharge, transfer (ADT) notifications on patients to community providers, a massive move to make transitions from hospital to home safe and seamless for patients across the country. Studies show that readmissions to the hospital are reduced as much as 20% when patients are seen by a doctor within the first week after a hospitalization. Often the blocker is not knowing a patient was discharged. CMS is putting some serious muscle behind getting information moving and is using their leverage as a payer to create new economic reasons to share. We love it.

ONC wants to crack-down on information blocking (hopeful). Leveraging their role as a regulator, the Office of the National Coordinator (ONC) is proposing new penalties to stop technology companies, information networks and providers from hoarding health data. I’m hopeful that this program will help break down silos that stop patients and providers from receiving crucial information. However, there are exceptions for “reasonable and necessary costs” and other possible work-arounds could be exploited to maintain the status quo.  

TEFCA v2 would slow national connectivity (bad). Designed as a framework for achieving nationwide connection between local health data networks through a “network of networks,” we fear the complex new Trusted Exchange Framework and Common Agreement (TEFCA) will do the opposite. By proposing novel approaches and definitions—and requiring that every node build new technology functions to segment data and rewrite contracts with participants—TEFCA risks slowing down or stopping exchange that is now finally occurring across networks, counter to the intent of Congress. 

The Cures Act specifies that TEFCA “shall take into account existing trusted exchange frameworks and agreements used by health information networks to avoid the disruption of existing exchanges between participants of health information networks.” We believe TEFCA in its current form would disrupt hundreds of millions of existing exchanges between hundreds of thousands of participants in health information networks.  

We agree with the goal of TEFCA and believe it is already being achieved in the market today. We urge ONC to put a hold on rolling out the proposed approach and focus effort on implementing the information sharing and blocking regulations. These rules are critically important to furthering the nation’s interoperability, and we support them. They represent a fundamental paradigm shift in how health care entities exchange information, and it will take stakeholders time to work through implementation and develop new organizational policies. Adding the complex structure of TEFCA on top of these regulatory obligations will hamper progress. 

We’re looking forward to continuing the rapid growth of our California network with tailwind provided by the best of these new policy actions. We’re confident the voices of California healthcare have been heard in DC and that our community will be prepared to leverage these policies to advance information sharing in 2020.

Claudia Williams is CEO of Manifest MedEx and the former senior advisor for health innovation and technology at the White House, where she helped lead  data sharing, care transformation, and precision medicine efforts under the Obama administration.

This post originally appeared on LinkedIn here.

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2 replies »

  1. I totally agree with this blog. Currently I am a patient of tooth disease at
    The costs here are appropriate and they arranged a 3 way syringe without asking me to pay for it.
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  2. Hi Claudia! It’s not clear from your post how you feel about patient-directed sharing rather than the current HIPAA walled garden, which seems to include Manifest MedEx and, to my knowledge, practically all other health information brokers.

    By building on top of HIPAA instead of patient transparency and patient-directed data use, these HIPAA networks need to use unreliable patient matching and their opaque operation makes it almost impossible for patients to report data breaches. Maybe most important, however, is that HIPAA-based brokerage misses the vast majority of valuable health-related data such as social determinants of health and sensitive behavioral health. In 2019, what other industry besides healthcare operates networks that are opaque to the data subject?

    And then we have letters to Congress like this: who’s signatories seem to correlate quite well with the HIPAA incumbents that are wasting, maybe $1Trillion per year according to JAMA American Journal of Medicine

    Correlation may not be causation, but the role of politics in the pending regulations cannot be understated. Without patient-directed data use and analytics, policy to reduce the cost and disparities of US healthcare will be just politics for the foreseeable future.

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