Intrepid Ascent is updating this blog with health IT and data management dynamics of the COVID-19 response (e.g. the importance of lab data, recent state and federal waivers on data privacy, the role of data sharing networks, emerging IT-enabled care coordination use cases) and additional resources.
The coronavirus pandemic has dramatically changed the way health care providers care for their patients. Although telehealth has been available for many years, it has not been widely adopted for reasons related to the way telehealth services are reimbursed, federal and state privacy and security requirements, and financial or technical constraints. However, the emergency response to the current crisis has led clinicians to quickly operationalize their telehealth capabilities to care for their patients while adhering to shelter-in-place guidelines. With virtual health care rapidly becoming the new normal, health systems will need to make informed decisions about how to balance the use of telehealth with in-person encounters, while policy makers will need to consider policy and regulatory changes that may need to be made to support the long-term sustainability of telehealth.
Health systems across the country have been urged to rapidly transition to telehealth when possible to prevent the spread of coronavirus. NYU Langone Health, a New York City-based health system that rarely used telehealth prior to the pandemic, went from zero to 5,500 telehealth visits within two weeks. Kaiser Permanente is averaging 65,000 telehealth encounters per day as a result of the expansion. Telehealth has proven useful during the pandemic in many ways: urgent care centers are conducting assessments remotely for people who are symptomatic and recovering at home; individuals with chronic diseases are managing their conditions with their primary care providers in real-time; and health technology firms are rapidly advancing the development and deployment of tools to support at-home care, such as remote heart and glucose monitors, home lab testing, and app-based health tracking software. This dramatic uptick has been propelled by changes at the federal level to reimburse providers for services, allow telehealth care between states, and relax Health Insurance Portability and Accountability Act (HIPAA) regulations around technology use.
Prior to the pandemic, significant regulatory and legislative barriers made telehealth adoption difficult. In 1997 Congress made telehealth a reimbursable service under Medicare, Medicaid, and the Children’s Health Insurance Program but only in limited circumstances: a patient had to be geographically located in an underserved rural area and the encounter could not take place inside a person’s home. Additionally, interstate licensure has been a barrier because most states require physicians to be licensed in the state where they are practicing medicine. In March of this year the Centers for Medicare and Medicaid Services (CMS) issued temporary policy measures to make it easier for individuals to receive medical care through telehealth during the COVID-19 public health emergency. These changes allow providers to:
- Conduct telehealth with patients located in their homes and outside of designated rural areas;
- Practice remote care, even across state lines, through telehealth;
- Deliver care to both established and new patients through telehealth; and
- Bill for telehealth services (both video and audio-only) as if they were provided in person
The types of telehealth services covered by Medicare have also been temporarily expanded to include evaluation and management visits provided in inpatient, emergency department, and nursing facility settings, as well as in the patient’s home; certain physical, occupational, and speech therapy services, and psychiatric evaluations and visits. The full list of reimbursable telehealth services is on the CMS website.
At the same time, the U.S. Department of Health and Human Services (HHS) issued a notification of enforcement discretion to allow HIPAA-covered health care providers to use remote communications technologies that may not fully comply with HIPAA privacy and security requirements. During the national and public health emergency, HHS’ Office for Civil Rights will not impose penalties for noncompliance with the regulatory requirements under HIPAA in connection with the “good faith provision of telehealth.” Popular applications that were previously not considered fully compliant with HIPAA that are now permitted include Apple FaceTime, Facebook Messenger, Google Hangouts, Zoom, and Skype; public facing applications such as Facebook Live, Twitch, and TikTok are still prohibited. While the waiver has offered providers more flexibility, the temporary nature of this waiver, along with a lack of clear guidance on which applications and/or services are approved or not, can be extremely challenging for providers to navigate, particularly for smaller physician practices.
Although these changes are temporary, health care leaders are hopeful that the trend will continue in the current, positive direction. During a May 26th press conference, CMS and the Trump Administration signaled that some of the policy changes may become permanent, stating that the president “has made it clear that he wants to explore extending telehealth benefits more widely.” If some of the temporary measures are made permanent, it will go a long way to address the challenges noted above with the current waiver. In addition to looking to Congress to pass legislation to make certain changes permanent, policymakers will need to carefully balance the benefits with unresolved privacy and security risks and ensure that existing protections in HIPAA are not undermined. Long before the current crisis, privacy and security concerns plagued telehealth technology, particularly lack of controls or limits on the collection, use, and disclosure of personal information. Even as providers and consumers are becoming accustomed to video chatting, platforms such as Zoom have recently come under fire for their lax security controls. More oversight of approved telehealth tools and a comprehensive regulatory framework will be needed to bolster trust and confidence among consumers, health care providers, and privacy advocates.
Another critical factor for consideration is populations of people for whom telehealth might not be appropriate. A recent poll suggests that there still are limitations for remote monitoring among people ages 65 and older. While the majority of them say they have a computer, smart phone or tablet with internet access at home, only 11% have used a device to talk by video to a doctor or health care provider within a two-week period. Patients with mental health, addition or abuse problems may not have a safe and confidential place for virtual visits. Older people of color and those with low socioeconomic status, which recent data has shown are at higher risk of health complications due to COVID-19, experience barriers to telehealth including lack of technology, digital literacy and a reliable internet. If the impact of telehealth on different populations is not carefully studied, there is a risk of negatively impacting quality of care and exacerbating health inequities in our society.
To understand the impact of telehealth with the interventions and short-term policy measures that are currently in place, a structured series of data will need to be established as well as training for clinicians on how to capture this data will be needed. Zeke Silva, M.D., Medical Director of Radiology at Methodist Texsan Hospital, says:
“We are living through one of the largest telehealth pilot studies in history. 6, 12, 18 months from now, we will look back on this time to objectively evaluate what worked and didn’t work. And why. The quality of our interactions, patient experience, outcomes and documentation will be an important part of that analysis.”
The rapid adoption of telehealth is another example of how policymakers and health care and community systems in this country have responded to the pandemic in a remarkable way. COVID-19 will have a long-lasting impact on the role of telehealth in our health care system. With the current ability to capture, share and analyze data, we should leverage this unprecedented opportunity to determine what that will look like in the future while ensuring the appropriate data protections are in place to foster trust and support long-term sustainability.
 Becker’s Hospital Review. “NYU Langone rapidly expands virtual care amid ‘explosion’ of COVID-19 pandemic in New York.” 2020: https://www.beckershospitalreview.com/telehealth/nyu-langone-rapidly-expands-virtual-care-amid-explosion-of-covid-19-pandemic-in-new-york.html.
 Becker’s Hospital Review. “Troubleshooting the rapid growth of telehealth, data-sharing during COVID-19: Key insights from Kaiser Permanente & Keck Medicine of USC.” 2020: https://www.beckershospitalreview.com/telehealth/troubleshooting-the-rapid-growth-of-telehealth-data-sharing-during-covid-19-key-insights-from-kaiser-permanente-keck-medicine-of-usc.html
 Jercich, Kat. “Telehealth’s post-COVID challenges: Integrating in-person care.” 2020. https://www.healthcareitnews.com/news/telehealths-post-covid-challenge-integrating-person-care
 Cubanski, Juliette. “During the COVID-19 Emergency.” 2020: https://www.kff.org/coronavirus-policy-watch/possibilities-and-limits-of-telehealth-for-older-adults-during-the-covid-19-emergency/
 Velasquez, D. Mehrotra, A. “Ensuring The Growth Of Telehealth During COVID-19 Does Not Exacerbate Disparities In Care.” 2020: https://www.healthaffairs.org/do/10.1377/hblog20200505.591306/full/
 Silva, Zeke. “Telemedicine amid COVID-19.” AMA Physician Innovation Network Discussion. 2020: https://innovationmatch.ama-assn.org/groups/ama-physician-innovation-network-public-area/discussions/Telemedicine-amid-COVID-19.
Coordinated entry processes have helped identify and support a vulnerable population during COVID-19 Emergency Response
Many state and federal programs in the past five years have focused on building connections between service sectors to better support vulnerable people in our communities. In California, one of these programs funded by the State’s 1115 waiver (Medi-Cal 2020) is Whole Person Care (WPC) and our firm has worked closely with many WPC programs. These county-level initiatives often focus on improving programmatic and data sharing linkages between health, behavioral health, homelessness and other social determinants programs. Given the homelessness crisis in many California municipalities, WPC programs have generally taken-on the effort of linking housing services with other sectors more directly than many comparable 1115 waiver programs in other States. As a part of this work, many WPC programs have worked hand in hand with their Housing and Urban Development (HUD) funded service networks (called Continuums of Care) to implement coordinated entry policies that define a unified process for prioritizing services and matching people experiencing homelessness to the program that best fits their needs.
Whole Person Care counties have been working to create relationships, data sharing agreements, and new partnerships between clinics, hospitals, emergency response, and community-based organizations that provide myriad services. These efforts have laid a foundation for better collaboration in times of crisis. The WPC Evaluation team at the UCLA Fielding School of Public Health published an article in the April 2020 issue of Health Affairs on the integration of health and human services in WPC programs. Their related blog post, “How California Counties’ COVID-19 response benefited from the ‘Whole Person Care’ Program” discusses which aspects of WPC innovation and collaboration are being refocused on COVID-19 response. They summarize,
Challenges to emergency response include the need for centralized leadership and rapid and effective information sharing; this is necessary to raise awareness of priorities and implement a coordinated response across all sectors that provide essential health and human services. WPC pilots can address these challenges, as they are typically led by county health or public health agencies and include an explicit focus on development of cross sector partnerships, forming multidisciplinary care teams, and building data sharing infrastructure to support care for vulnerable residents.
One of the most important cross-sector collaborations for effective COVID-19 response that we have witnessed is between health and housing. In order for counties to implement more effective and safe shelter in place protocols for all people experiencing homelessness, and quarantine for people who test positive for COVID-19 or have symptoms, they have had to quickly and creatively expand access to shelter and emergency housing. Many are keeping watch on how the state is ramping up access to motel rooms and less dense shelter options through Federal Emergency Management Agency (FEMA) funding and partnerships with local motels (see the recent California Health Care Foundation blog post on COVID-19 and Homelessness). Governor Newsom announced Project Roomkey, with 75% FEMA matching funding for up to 15,000 hotel/motel rooms only two weeks after issuing the state stay at home order.
While generating supply is one critically important piece of the solution, having a system for assigning people to resources is another piece. The work that counties have done over the past 4 years to design and organize county-wide coordinated entry housing service triage systems have also contributed to effective response in a time of crisis. HUD’s “Coordinated entry policy brief” defines the qualities of effective coordinated entry processes, which, “…help communities prioritize assistance based on vulnerability and severity of service needs to ensure that people who need assistance the most can receive it in a timely manner.”  Many counties are using the coordinated entry processes established between networks of service providers to funnel housing and shelter requests for COVID-19 response and make sure that they are handled in a consistent, fair, transparent, and rapid manner. Counties have built strong and structured relationships with service partners through WPC and coordinated entry collaboration and are putting those relationships and processes to work quickly for identifying the community’s most vulnerable, prioritizing outreach, housing vulnerable people quickly, and supporting them once they are housed by connecting to additional services and supports.
In Marin County, WPC had already brought together a multi-disciplinary team to provide wrap around services to clients with complex needs before the current emergency. Their WPC and coordinated entry teams worked closely together to focus on their goal of ending chronic homelessness in the County. These same teams are now providing leadership in the COVID-19 emergency response and all emergency housing efforts are functioning through the established Coordinated Entry List processes. Similarly, in Alameda County, the coordinated entry processes had already created a shared managed list of people experiencing homelessness and their assessed relative vulnerability, called the “By Name List.” This list is currently helping providers target outreach and efforts to find temporary housing for those most at risk of serious outcomes from COVID-19 exposure. Contra Costa County created a new division to bring together housing and health initiatives called Health, Housing and Homelessness. This division manages their coordinated entry list, and during the COVID-19 emergency has worked to develop and implement rapid and creative solutions to support people experiencing homelessness during this crisis, from reducing density in shelters, securing hotel rooms, distributing tents and handwashing stations, and outreach and education. Their efforts are described in a recent publication called “COVID-19, 90 Days in Review; Contra Costa’s Pandemic Response.”
One leader of a local social service organization recently reiterated that housing is often the most important social determinant of health. Coordinated entry processes are working to make sure we are matching the housing resources we have to the most vulnerable residents in our communities and can be an important model in other California counties, but also in other States where cross-sector collaboration is happening under the auspices of different programs, or in the form of local community initiatives.
 Pourat, Nadereh, Emmeline Chuang, Leigh Ann Haley. “How California Counties’ COVID-19 response benefited from the ‘Whole Person Care’ Program” Health Affairs Blog. April 28, 2020. https://www.healthaffairs.org/do/10.1377/hblog20200427.341123/full/
 Bion, Xenia Shih. “Homelessness and COVID-19 collide in California.” California Health Care Foundation Blog. April 6, 2020. https://www.chcf.org/blog/homelessness-covid-19-collide-california/
The Office of Governor Gavin Newsom. “At Newly Converted Motel, Governor Newsom Launches Project Roomkey: a First-in-the-Nation Initiative to Secure Hotel & Motel Rooms to Protect Homeless Individuals from COVID-19: April 3, 2020: https://www.gov.ca.gov/2020/04/03/at-newly-converted-motel-governor-newsom-launches-project-roomkey-a-first-in-the-nation-initiative-to-secure-hotel-motel-rooms-to-protect-homeless-individuals-from-covid-19/
 Housing and Urban Development. “Coordinated Entry Policy Brief.” 2015: https://files.hudexchange.info/resources/documents/Coordinated-Entry-Policy-Brief.pdf
 Contra Costa Health Services. “COVID-19; 90 Days in Review; Contra Costa County’s Pandemic Response, May 2020.” https://813dcad3-2b07-4f3f-a25e-23c48c566922.filesusr.com/ugd/ee8930_fae73bfbf7a04ca793c824803cd552a4.pdf
“The systemic frustrations are the most exhausting…Today, we ran out of oxygen masks for the patients to use. So much work goes into trying to locate and obtain more. We had a shortage of oxygen tanks, so we connected more than one patient to larger tanks – stuff we normally wouldn’t do. Will we run out of masks entirely? People can give you answers, but they are not witnessing what is happening in front of you. People can tell you it will be O.K., and it is solvable, but this has never happened before.” These are the words of Dr. Hashem Zikry, an intern in the emergency-medicine residency program at Mount Sinai Hospital in New York City currently serving a six-week rotation at Elmhurst Hospital in Queens.
People can tell you it will be O.K., and it is solvable, but this has never happened before. The coronavirus is a black swan, to use the title of the book by Nassim Nicholas Taleb on the dramatic impact of highly improbable events. A sense of uncertainty is pervasive today in the wake of this black swan, as standard models for understanding public health, the economy, and social relations have broken down. In health care, best practices for evidence-based medicine are in flux. To quote Dr. Zikry again, “‘We ourselves are so confused and scared, and every day when we come on shift it seems like there’s a different protocol,’ – the guidance comes from the state Department of Health – ‘for who are we testing, who are we admitting.’”
Leaders in other spheres find themselves in similar circumstances. Prime Minister Mark Rutte of the Netherlands recently noted that leaders today “have to make 100 percent of the decisions with 50 percent of the knowledge, and bear the consequences.” This can be hard for the public to hear at a time when people seek clarity. We want our doctors to calmly make definitive diagnoses, our hospitals to follow proven procedures, and our policy-makers to make decisions based on facts for the collective good. We’re looking for expertise (just look at the widespread popularity of, and sympathy for, Drs. Fauci and Brix), while the experts are saying back to us: we don’t know.
But we are learning fast. The amount of new information being generated and circulated and absorbed today is shockingly high. The ineffectiveness of long-established norms in the face of the coronavirus has unleashed improvisation and innovation, from connecting multiple patients to an oxygen tank to the race for a vaccine to new social practices, and lives are at stake along every link in the chain. As challenging as this has been, it is also freeing, with new questions emerging as we acknowledge the limits of our understanding.
This is how science works, including medicine. Science is humble. A hypothesis or a diagnosis, however well-informed, is not dogma. It must be adapted as new data emerge and as new frameworks for interpretation replace older models. The same is true for any evidence-based protocol or best practice enshrined in policy. These are all artifacts of informed adaptation in an uncertain world.
Some people and organizations and countries will be more effective than others in responding to uncertainty with impactful innovation. Leaders with epistemological modesty, like the Prime Minister of the Netherlands, are best prepared to manage the changes of our time through their responsiveness to new data and ideas. The same is true of clinicians like Dr. Zikry, acutely aware of what they don’t know.
Those of us working in health information technology have a unique obligation to equip these decision-makers with the best information possible. Action cannot wait. We must redouble our efforts to improve data-sharing and analysis to enable the next life-saving clinical decision, the next enlightened policy, and the next brilliant insight that changes everything, again.
 Galchen, Rivka, “The Longest Shift,” The New Yorker. April 27, 2020.
 Taleb, Nassim Nicholas. The Black Swan. Random House. 2007.
 NLTimes, March 12, 2020.
 Budasoff, Eliezer, “No Estamos Listos Para El Incertidumbre,” El País, April 25, 2020.
For nearly 20 years, the Health Insurance Portability and Accountability Act (HIPAA) has carefully protected the privacy of individual’s health information, while still promoting appropriate data sharing and communications among health care providers. In previous posts we have talked about the importance of data in the response to the COVID-19 crisis – data must be made available when and where it is needed to support patient care and public health activities. While privacy remains a top concern in healthcare, this is an unprecedented time for our country and our health care system is being challenged in new ways. If entities subject to HIPAA are constrained in their ability to share critical data or they are worried about penalties for non-compliance, then the effectiveness of that data is diminished.
Although the HIPAA Privacy Rule is not suspended during the current public health and national emergencies, the HHS Office for Civil rights (OCR) is committed to “empowering medical providers to serve patients wherever they are during this national public health emergency.” A critical part of the response is ensuring data is made available to support public health activities. The HIPAA Privacy Rule already allows certain information to be shared to assist in nationwide public health emergencies, as well as to assist patients in receiving the care they need. It also gives patient’s certain rights regarding how their information can be used and shared.
To ensure the flow of data is not impeded, the US Department of Health and Human Services has exercised its authority to waive sanctions and penalties for non-compliance with certain provisions of the HIPAA Privacy Rule by covered entities and their business associates. The enforcement discretion does not extend to any obligations under the HIPAA Security or Breach Notification Rules, but it does free providers from the added stress of navigating complex legal and operational requirements so they can focus on providing care to impacted individuals, communities, and slowing the spread of COVID-19.
To learn more about HIPAA and COVID-19, including updated guidance for HIPAA covered entities and business associates, visit the OCR website.
In future posts, we will explore in greater detail how the government and technology sectors are working together to flatten the curve while still protecting individual rights to privacy. We will also share how the current crisis is helping to remove roadblocks related to telehealth and sharing sensitive information such as substance use disorder treatment records. Often in times of crisis, opportunities emerge to create long-lasting positive change. Hopefully this crisis is no different and the health care community can rally together to focus less on when and how data can’t be shared and instead focus on “getting to yes”.
As we brace for the peak of new COVID-19 cases and deaths in various parts of the U.S., frontline health care workers face a continually increasing influx of infected patients. But what about the crisis taking place outside the hospital walls? In the midst of uncertainty and the need for further social distancing, health care organizations and providers in our communities are burdened with the challenge of continuing to provide care to their patients while protecting those who are at greater risk of developing serious complications from the disease.
Data from those who have been infected suggests that individuals with underlying medical conditions (e.g. chronic lung disease, diabetes, heart disease, chronic kidney disease, etc.) have a higher risk for severe COVID-19 related outcomes than those who do not. Adults 65 years or older, who most often have multiple comorbidities, make up half of those who have been admitted to ICUs, and about 80% of those who died as a result of COVID-19. A recent report revealed that obesity, a previously unrecognized risk factor, is common among those under the age of 60 with COVID-19 admitted to the hospital and in need for critical care.
Living situations are also contributing factors as we have seen during the initial outbreak in places like nursing homes and long-term care facilities. The homeless and jail populations also live in congregated settings, making it easier for the infection to spread among them. People who lack socioeconomic resources, including those among the homeless, poor and immigrant populations, are at higher risk of COVID-19 because they don’t have access to adequate resources. Similarly, rural areas of the country do not have access to the same infrastructure as urban regions such as greater New York City or Los Angeles. As a result, people living in these areas will become even more vulnerable to the disease.
As more data has become available, there is a growing awareness that providers need to find innovative ways to identify COVID-19 risk factors in their communities. Examples of health information technology (IT) being used to better risk stratify patients are emerging. In California, Marin County is establishing an integration between their local Housing Information Management System (HMIS) and their community case management platform to identify and place at-risk homeless individuals through the coordinated entry process, a streamlined system designed to efficiently match people experiencing homelessness to available housing, shelter, and services based on their strengths and needs. In Southern California, Kaiser Permanente providers are using their electronic health record (EHR) to generate clinical reports to prioritize patients by risk level in order to understand patients’ medications and other important aspects of their health history that can impact their COVID-19 risk. They are using this information to support additional treatment and follow-up to those who need it.
EHR, case management system, and other health IT vendors are incorporating risk factor data fields and logic, along with other COVID-19 information, to flag high-risk patients for front-line providers. New York City is using their regional health information exchange (HIE), Healthix, to identify high-risk patients and providing alerts to support COVID-19 response efforts. Privacy restrictions that typically make it challenging for this kind of data sharing to occur have been lifted with New York State Department of Health allowing COVID-19 alerts to be sent to providers without patient consent.
In California, the HIE Manifest MedEx is offering dashboards to provider organizations to explore COVID-19 risk factors among their COVID-positive patient populations, and has also partnered with Riverside County to create a detailed dashboard on COVID in the County. Other California Counties such as Santa Cruz have compiled their own publicly available surveillance dashboards with data from CalREDIE, California’s electronic laboratory reporting repository.
Although some recent COVID-19 data is showing a better outlook than predicted, how we mitigate risks among our diverse population will still be critical. Even when more testing and an FDA-approved medication are made available, how well people do will be significantly influenced by access to quality health care and other vital resources. This pandemic has not changed the priority-level of our most high-risk and vulnerable populations. These individuals will remain high-risk and vulnerable long after COVID-19 has settled and through the next crisis. This pandemic should serve as a turning point in how we capture, manage and share data across sectors. There are innovative examples throughout the country that we can glean from. If we can leverage the opportunity that this crisis has given us to come together in a rapid, coordinated and collaborative way, we can provide healthcare organizations and providers with the information that they need in order to support these populations and save lives.
 Centers for Disease Control and Prevention: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/groups-at-higher-risk.html
 Centers for Disease Control and Prevention: https://emergency.cdc.gov/coca/calls/2020/callinfo_032720.asp
 Jennifer Lighter, MD, Michael Phillips, MD, Sarah Hochman, MD, Stephanie Sterling, MD, Diane Johnson, MD, Fritz Francois, MD, Anna Stachel, MPH, Obesity in patients younger than 60 years is a risk factor for Covid-19 hospital admission, Clinical Infectious Diseases, , ciaa415, https://doi.org/10.1093/cid/ciaa415
 Center for Care Innovations: https://www.careinnovations.org/resources/population-care-during-covid-19-caring-for-patients-with-chronic-conditions/?utm_medium=email&utm_campaign=CCI%20Newsletter%20April%208%20COVID19%20V4&utm_content=CCI%20Newsletter%20April%208%20COVID19%20V4+CID_608df27a8513115a4c4ad1f4474f1a65&utm_source=Campaign%20Monitor&utm_term=Caring%20for%20Patients%20with%20Chronic%20Conditions
 John Hopkins University: https://www.hopkinsacg.org/document/identifying-patients-at-higher-risk-from-covid-19/
 Raths, David “Some HIEs Stepping Up to Play Key Role in COVID-19 Response” https://www.hcinnovationgroup.com/interoperability-hie/health-information-exchange-hie/article/21130588/some-hies-stepping-up-to-play-key-role-in-covid19-response
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, 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. 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. 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.
 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
 New York eHealth Collaborative: https://www.nyehealth.org/shin-ny/what-is-the-shin-ny/
As Federal, State, and local public health agencies mobilize to respond to the COVID-19 crisis, they are looking to sift through the noise of data available to them to determine how best to plan for the acute management of infected individuals. While data infrastructures across the country handle a variety of different types of data that can potentially be helpful, the single piece of data that is most useful by far is the result of approved COVID-19 testing – the lab result. No other piece of information is as timely, definitive, or specific (from a data quality and completeness standpoint) as a simple laboratory test result. Lab test results are the place where documentation of a positive COVID-19 case will originate in a definitive way – they contain demographic and geolocated information about the individual being tested, and also where that person is seeking treatment (in the form of the ordering provider for the lab test).
Unfortunately, this fact is a major problem for a coordinated, data-driven response to COVID-19 in the United States, given significant gaps in the sharing of lab results between key players in the US healthcare system. The implementation of electronic lab data interfaces by public health departments and key data aggregators such as Health Information Organizations (HIOs) is uneven across the national landscape. With the exception of the major reference labs like Quest Diagnostics and Labcorp, the majority of lab results delivery is still done on paper, via fax, a fact that is especially true for public health labs – which are performing the majority of COVID-19 tests to date. Related gaps and bottlenecks in the routing of lab data make it challenging for public health agencies and health care providers to gain access to accurate information on who has COVID-19 and who does not.
Diagnosis codes (generally in the form of ICD-10 codes), entered by health care providers into their electronic health records when they make a diagnosis, would seem to present an alternative to lab results for monitoring COVID-19 cases, due to the more universal health care focus on electronic sharing of diagnoses. However, there are three primary obstacles to this approach. First, diagnosis codes currently in use for COVID-19 range from temporary CDC guidance to use a combination of existing ICD-10 codes, to a special World Health Organization ICD-10 code that is being adopted on a region-by-region basis, since it has not gone through the official balloting process for the US healthcare system. Thankfully, an emergency update to ICD-10 with a single diagnosis code for COVID-19 was recently announced for April 1 by the CDC that should help to alleviate this problem. Second, a diagnosis depends on a health care provider actually encountering an individual patient and entering a code (or a combination of codes) – diagnoses rarely if ever are automatically triggered in EHR systems based on the status of a COVID-19 test result. This means that even when they diagnoses are specific enough to be used for syndromic surveillance or other types of monitoring, they are often not timely and skew toward availability for patients that have been hospitalized. Third, many public health departments don’t have ready access to clinical diagnoses anyway, and they often don’t fully trust the data given the issues above.
In contrast, they do trust lab data, as it has been largely consistent for COVID-19 testing across the country and stands to be reinforced as the large reference labs come online and implement their LOINC code-sets (which look to conform to what is already in wide use). Unfortunately, lab data is not as cleanly routed through the health data ecosystem as diagnoses are. This is partially due to the fact that electronic interfaces to route these data have generally not been prioritized by States and HIOs, but also due to the fact that key parts of the laboratory ecosystem remain paper-based. Most COVID-19 tests have so far been processed by public health labs, which exist either at the State or local level in most cases – although some States are much more complex and may have many more public health labs than others (New York has two, California had 32 listed as of 2018…all at the local or regional level). The vast majority of these labs remain paper-based, and report lab results back to the ordering provider via fax (who then keys the result into the patient’s electronic health record). In some cases, as in both California and New York, the public health labs even report test results on paper or via a secondary data entry method to the public health departments responsible for tracking and managing disease outbreaks like COVID-19. This situation is partially a result of our historical underfunding of public health systems, who have not prioritized electronic laboratory results delivery.
Typical “Flow” of Laboratory Results Data, Public Health Labs
It is important to understand that in both the commercial laboratory world and also the public health laboratory world, test results are mainly intended to be delivered to the ordering provider – the individual (or facility) that actually ordered the test. Reporting to public health departments for syndromic surveillance sometimes falls on the labs themselves, and sometimes on the ordering provider – something they are supposed to do once they get back the lab result. In some cases, lab results can be sent to a “CC’ed” entity (maybe a public health lab, maybe an HIO) – but this rarely happens outside of the commercial reference labs, since public health labs often lack the resources to send out multiple copies of an individual lab result (especially if they are pushing results out via fax). So in order for public health lab test results to get to State and local public health agencies as well as to aggregators like HIOs, the data is often circuitously routed to ordering providers via fax, who then need to key the information into their EHRs for it to get picked up and reported out to other systems.
Reference labs like Quest Diagnostics and LabCorp, on the other hand, often send their results to the ordering provider electronically, and are in some geographies CC’ing HIOs on lab results. While these and other reference labs are still working on implementation of COVID-19 testing, their entry into the space will vastly increase the degree to which electronic lab results for COVID-19 testing are being delivered to both providers and HIOs, in places where an electronic results delivery connection already exists.
Typical “Flow” of Laboratory Results data, Reference Labs
The key gap, even with the reference labs, is that HIOs and public health departments are not always on the CC “List” for lab results originating from the reference labs – impeding their ability to utilize this extremely valuable data resource to manage the COVID-19 crisis. In cases where they are, such as in Indiana and New York, HIOs are playing a significant public health role as a de-facto repository of COVID-19 test results, or in the Indiana case, as a centralized alerting service that triggers when a new positive result comes in. But in places where they are not (e.g. many parts of California) they may only be doing so on a comparatively small scale.
While we cannot go back in time and fix this issue, we can work to remedy it in the present. HIOs, States, labs and public health agencies should all be building and enhancing current lab data interfaces now. Focusing on less high-fidelity data like diagnosis codes or admit, discharge, transfer data just because it is currently available is not a substitute for getting access to the gold standard for COVID-19 cases. Models like Indiana’s already exist for integrating this information more broadly, and should be replicated wherever possible.
 Centers for Disease Control and Prevention, March 2020: https://www.cdc.gov/nchs/data/icd/Announcement-New-ICD-code-for-coronavirus-3-18-2020.pdf
 LOINC Codes: 31208-2, 75325-1, 94309-2
 California Association of Public Health Laboratory Directors, May 2018: http://websites.networksolutions.com/share/scrapbook/74/745076/Laboratory_Listing_Report.pdf
 These systems are often a basic web portal that require some degree of demographic information to be entered along with a positive test result LOINC code. They do not transmit a copy of the lab result in any kind of structured, encoded data format and are often very light on the level of information that is required in order to actually submit a case.
 Raths, David “Some HIEs Stepping Up to Play Key Role in COVID-19 Response,” March 2020: https://www.hcinnovationgroup.com/interoperability-hie/health-information-exchange-hie/article/21130588/some-hies-stepping-up-to-play-key-role-in-covid19-response
The coronavirus has unleashed a series of paradoxes into our lives. We show solidarity by staying apart, with the belief that young people meeting for brunch endanger elders in rest homes. We cease gathering around dinner tables, while hiking trails are packed not with seekers of solitude but with seekers of social connection (for as long as parks stay open). Waiters have lost their jobs, grocery-store clerks serve on the front lines, and there is no traffic on the Bay Bridge.
It is shocking how quickly we have adjusted to this new normal. At Intrepid Ascent, we’re as connected to each other as ever before even though no one has been in the office for two weeks. Most people I know are having more conversations with family and friends, gathering for virtual chats and checking in through an expanding circle of group texts. People are finding ways to help each other navigate dramatically altered times.
Amid these revolutions in daily life, there’s an eerie sense of calm before the storm in health care. Yes, the planners are busy planning and needed space and equipment are being considered, counted, ordered, set aside. But at least here in California, Emergency Departments and Urgent Care centers are relatively quiet. A large medical center nearby has actually emptied out, keeping doctors and patients at home and as healthy as possible in anticipation of the coming waves of very sick people needing intensive care. And many potential patients are themselves reluctant to visit health care settings, which are perceived to be hot-spots for COVID-19.
So we’re rationing health care, both consciously and unconsciously, on a vast scale in response to the crisis. Not yet in terms of which lives to save with a respirator or bed in the ICU, but in terms of who gets tested and receives sustained professional attention. Given the botched testing regime in the US to date, people with COVID-19 symptoms who do not seem to require immediate intensive care are told that while they probably have the virus, they will not be tested, nor will their contacts be traced. They should stay home and follow the guidelines, no matter how many others they live with or how porous the quarantine.
When such a diagnosis of COVID-19, whether remote or in person, is entered into an individual’s electronic health record, it will be coded in a manner that can be shared and communicated widely beginning April 1, thanks to an unprecedented update to diagnostic codes (which otherwise occurs on on annual basis, in October). Nevertheless, as our post on lab data explains, there is a disconnect between clinical and public health databases, and a diagnosis alone will not usually trigger public health to count an individual as an official COVID-19 case. Public health agencies are relying on positive lab test results for that, and we’re not testing nearly enough. So, in this very basic way – knowing who has the virus and who doesn’t – we’re in a fog. Thankfully, bright spots are emerging with the creative use of software tools by front-line staff to assess risk factors for COVID-19 and to coordinate services for vulnerable populations such as the homeless; and the engines of Silicon Valley innovation are revving up.
As the coming storm crashes into our imperfectly prepared institutions, we will need all of the tests, N95 masks, hospital and ICU beds, respirators, courageous medical staff, brilliant data scientists, and enlightened policymakers we can find. But also resilience, empathy, and ingenuity from the rest of us. Staying home and watching Netflix will not be enough. In Wuhan, in addition to aggressive testing and other measures to track and isolate the virus, “many people idled by the lockdowns stepped up to act as fever checkers, contact tracers, hospital construction workers, food deliverers, even babysitters for the children of first responders.”* An outbreak of common spirit is evident all around us, and I am confident that as the challenge deepens, so will the response. Let’s get ready.
*McNeil Jr., Donald G. “The Virus Can be Stopped, but Only With Harsh Steps, Experts Say,” The New York Times. March 22, 2020.
Note: CDC has released an emergency update announcing that there will be a single ICD-10 code for COVID-19 as of April 1, much earlier than the annual ICD-10 updates in October as stated below. The announcement is here. All relevant IT systems should be prepared to update to this new code and staff should be trained to use it. This change will increase the reliability of diagnoses data as an important counterpoint to lab data (see our post above, “Lab Data is the Gold Standard.”
As developments over the past several days have made clear, monitoring and addressing the coronavirus effectively will require consistent documentation of cases as they emerge, and accurate sharing of this information across organizations and IT systems. To this end, the CDC’s National Center for Health Statistics has announced that it will implement a new ICD-10-CM diagnosis code for the 2019 Novel Coronavirus (COVID-19), effective with the next update on October 1.
In the meantime, the CDC released interim guidance for the coding of encounters related to coronavirus. We recommend that you confirm that your ICD-10 code sets include the codes in this interim CDC guidance, and that you begin relevant staff training on documenting COVID-19 in accordance with these guidelines as soon as possible. Local public health authorities may issue further notices and requirements in the days ahead, so be on the lookout for those as well.
In addition to accurate public health reporting, accurate health information exchange among providers and labs will be critical for communities to stay ahead of COVID-19 through effective treatment of individuals, coordination across organizations, and population monitoring.
Coding scenarios covered in the CDC interim guidance include:
- Pneumonia case confirmed as due to COVID-19
- Acute bronchitis confirmed as due to COVID-19
- A case with COVID-19 documented as being associated with a lower respiratory infection, not otherwise specified or an acute respiratory infection, not otherwise specified
- Acute respiratory distress syndrome developed in conjunction with the COVID-19
- Cases where there is a concern about a possible exposure to COVID-19, but this is ruled out after evaluation
- Cases where there is actual exposure to someone who is confirmed to have COVID-19
Thanks to the courageous front-line health care and public health workforce responding to the virus, and to everyone else supporting them with the information, training, and tools necessary for them to succeed – for all of our benefit.