Uncertainty and Innovation

by | Apr 29, 2020 | Covid-19, Intrepid

 “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.[1]

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[2] 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.”[3] 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.[4]

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.

[1] Galchen, Rivka, “The Longest Shift,” The New Yorker. April 27, 2020.

[2] Taleb, Nassim Nicholas. The Black Swan. Random House. 2007.

[3] NLTimes, March 12, 2020.

[4] Budasoff, Eliezer, “No Estamos Listos Para El Incertidumbre,” El País, April 25, 2020.

Privacy and the Pandemic: Part 1

by | Apr 22, 2020 | Covid-19, Intrepid

 

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.”[1] 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. 

Limited Waiver of HIPAA Sanctions and Penalties During a Nationwide Public Health Emergency

Enforcement Discretion for Business Associates

Enforcement Discretion for Community-Based Testing Sites

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”.

[1] https://www.hhs.gov/sites/default/files/hipaa-and-covid-19-limited-hipaa-waiver-bulletin-508.pdf]

COVID-19: Supporting High-Risk Patients in Our Communities

by | Apr 16, 2020 | Covid-19, Intrepid

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.

[2] Centers for Disease Control and Prevention: https://emergency.cdc.gov/coca/calls/2020/callinfo_032720.asp

[3] 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

PULSE: California’s Critical Health Data Backbone Needs Strengthening

by | Apr 10, 2020 | Covid-19, Intrepid

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/