PULSE: California’s Critical Health Data Backbone Needs Strengthening

Disclaimer: I am a member of the California Interoperability Committee (CIC), which is the governing body for PULSE. The following is solely my own opinion, and in no way represents the opinions of the CIC, the California Association of HIEs (CAHIE), or CalEMSA.

On March 26th the California Emergency Medical Services Agency (CalEMSA) announced deployment of the California Patient Unified Lookup System for Emergencies (PULSE) in response to the COVID-19 disaster. PULSE is an electronic, web-based system that allows disaster healthcare volunteers (DHVs), California Medical Assistance Team (CAL-MAT) members, and Medical Reserve Corps members to query for health information anywhere in the State based on a person’s basic demographic information. PULSE has been deployed multiple times on a limited basis in response to natural disasters in California since 2017[1], including the devastating Camp Fire, giving DHVs working at key shelter locations the capability to look up key health information such as medications and medical problem lists for individuals coming into shelter locations.

For COVID-19, PULSE is being deployed to give DHVs and CAL-MAT members – who are working at temporary hospital and other acute (and chronic) care sites being stood up all over the state – a way to find patient records. CalEMSA is also, for the first time, exploring how to make PULSE available to local public health departments in order to augment local resources for combating the pandemic. This expanded deployment of California’s critical disaster response health information exchange system will no doubt become an absolutely critical element of statewide COVID-19 response efforts. Unfortunately, as critical as this system is to the COVID-19 response, it is far from perfect because the data pipeline for healthcare information in California is weaker than it should be.

PULSE Technical Diagram, California Association of Health Information Exchanges (CAHIE), 2017

The PULSE system in California operates by “asking” Health Information Organizations (HIOs) in the State if they have any health information on a given individual based on basic demographics that a DHV enters into an encrypted, password protected web-portal. PULSE then presents any records that it can find in a portal viewer that allows users to retrieve a record that the system finds. HIOs are essentially local aggregators of healthcare information (in addition to providing many other kinds of services). California has at least 15 HIOs operating in the State, depending on how an observer defines an HIO (California does not have a statewide definition), with many operating at the regional level. Even with a broad definition of what constitutes an HIO, California has significant “Whitespaces” in terms of HIO coverage; meaning that some parts of the State do not have an aggregator of health information capable of connecting to PULSE. Some notable geographic whitespaces include the majority of the San Francisco Bay area, the Southern Central Valley, many of the Alpine Counties in the eastern part of the state, and much of the Sacramento Metro area. Of the at least 15 HIOs that do exist in California, nine are currently connected to PULSE, with a tenth in the process of finalizing the technical details of its connection.[2] Two of the connected HIOs are large commercial hospital systems (a concept referred to as an “Enterprise HIO” in California), which gives some degree of general statewide coverage (although these represent only two of the four major hospital systems in the State).

While critical to California’s disaster readiness, the PULSE system is not something unique to the state. Other states like New York have systems that operate much like PULSE but that are essentially always turned on and that contain information from nearly every hospital in the state, with few or no geographic whitespaces.[3] Others have adopted strategies to facilitate health information exchange by creating a single statewide HIO, such as Indiana, Arizona, and Washington, so that organization essentially accomplishes the primary use case of a system like PULSE on its own. New York and Indiana, in particular, have benefited tremendously both from an acute care standpoint as well as a public health standpoint from being able to exercise their statewide systems nimbly in the current emergency.

As California begins to exercise the use of PULSE at state-designated emergency sites, individual counties should begin to determine how they can best exercise this new resource. The new use-cases for use of the system in response to COVID-19 that CalEMSA is currently exploring may become critical tools both now and in the future for local disaster and emergency response, but they will need help from those on the front-line at county agencies to understand what all of those use-cases may be. And perhaps even more critically, the entire healthcare community should think about how it can make PULSE a better resource for a broader set of critical, front-line workers in this crisis and future crises. While this period of experimentation and expansion of the PULSE system is much needed, both in the context of the current crisis as well as for general disaster response and preparedness, it is unfortunate that those on the front line need to work with a system that does not reliably allow for access to information for a large proportion of California residents.

The reasons for the incomplete HIO landscape in California, and therefore the limited data density of PULSE, go back over 25 years – but the reality at this point is painfully clear: the current disaster response data infrastructure for accessing healthcare data in California is incomplete and not nearly as functional as it is in similar states, like New York. The efforts of CalEMSA and the HIO community to design, test, implement, administer, and leverage PULSE have been incredible given the political and financial headwinds that they have faced in California – but the state needs to do better. There are steps that can be taken in the current crisis, like connecting HIOs that are not currently on-boarded to PULSE, to improve the system. And there are steps that can be taken to prepare for the next crisis, like filling-in the HIO whitespace in California – something that can be done with the right political will.

Politics and history aside, California owes it to its residents to provide the best emergency response infrastructure it can, and that means finding creative ways to use what we have now, and to make sure that next time it is the best system that it can be.

[1] Sanborn, B. “Emergency Responders to California Wildfire Used a Patient Lookup System to Harness Volunteer Providers” Healthcare Finance, December 2018: https://www.healthcarefinancenews.com/news/emergency-responders-california-wildfire-used-patient-lookup-system-harness-volunteer-providers

[2] California Association of Health Information Exchanges (CAHIE): https://www.ca-hie.org/initiatives/pulse/

[3] New York eHealth Collaborative: https://www.nyehealth.org/shin-ny/what-is-the-shin-ny/