Do we still care about COVID-19?

The other day, as I struggled to take in all the news, I found myself asking this question. And honestly I didn’t know the answer.

This Spring, when COVID suddenly seemed to have the world by the throat, it was almost all we thought about. But much has happened since then beyond the quarantine and social distancing and work and school and life from home. First the public outcry over police brutality across the country, and then lightning strikes that lit up the West. Each of these crises has been years in the making: crippling underinvestment in public health, enduring racial inequities, and a hotter, drier West due to climate change.

Together, this trio of COVID, inequality, and deteriorating environmental conditions has us down, and they feed on each other in pernicious ways. African Americans and Latinos experience dramatically higher mortality rates from COVID than whites; public health authorities and health care providers struggle to respond to traumatic events on multiple fronts; the effects of smoke exposure resemble and potentially mask COVID symptoms, and there are no longer massive shelters for people fleeing fires (no hugging, no dining-halls, etc.).

While each of these crises is a wake-up call, and they are more so together, where do we focus our attention? For many, the answer depends on the ease of accessing meaningful information in the moment. Everyone I know here in California, including my kids, has been checking air quality index numbers online every day for much of the past month. The AQI number for our current location, for our parent’s town, for nearby cities. It’s all so simple and user-friendly, a single number. In the spring, many of us monitored the COVID numbers, looking at the Johns Hopkins COVID Dashboard and state- and county-level figures. But these are more complicated than a single air quality number. 

Moreover, many Americans have rightly lost faith in the validity of the COVID figures they are presented with given our industry’s failure to accurately monitor COVID cases. Shame on us. Some important progress has been made, but with millions of rapid antigen tests now being distributed with no way to collect and synthesize many of the results, we will still be flying blind.* This lack of trusted data makes it very difficult for policy-makers to weigh risks and opportunities for us as a society, for local public health authorities to effectively intervene, and for us as individuals to make informed decisions about our own actions.

Staring at the dark orange sky over my house in the Bay Area a week and a half ago, COVID-19 was far from my mind. But I still wore a mask every time I left the house. Now that blue skies are back, normal life is resuming and we can breathe deeply. Normal life in a COVID world, that is, for a well-off white man like me. Many people seem willing to make the following level of trade-offs: masks, hand sanitizer, limited social gatherings outside, no baseball games, no kids’ sports (this is changing), school from home (now with pods), no bars or clubs, limited carpooling, no international flights but some travel across state lines, occasionally sit outside at a restaurant… and the corresponding number of sick, the number of deaths, do not impact most of us personally. We are not experiencing a 2% death rate among our circle of family and friends (of the 300 people closest to you have 6 died?). We are not seeing Italy or New York horror scenes in our hospitals. So we have come to accept this unprecedented but seemingly manageable level of trade-offs as it stands today, even as we mingle with others who are taking far fewer precautions. Based on our actions, we sort-of care about containing COVID-19.

Without a change in approach conditions are likely to deteriorate as we head into winter, exacerbating the long-term impacts of social distancing on our mental health and economy. And the hope for a vaccine – which I desperately share – increasingly acts as a seductive moral hazard in this environment: the more we believe that a vaccine will save us soon, the less accountability we feel to limit the spread of COVID today. As Dr. Fauci and others have begun to warn us, we will likely be living in quarantine conditions well into 2021. Even when we have a vaccine, it will not deliver us in a stroke of scientific brilliance. Rather, vaccinating the country, let alone the world, will be a slow and patchwork and messy public health mobilization, with inequitable access and imperfect information. So expecting someone else to save us – like big pharma – is not a viable strategy for how to live today.

But in a few weeks there will be an event that gives us as individuals a direct opportunity to participate in the collective will, to shape how we respond as a country to the trade-offs presented by COVID and to the momentous events of 2020 more generally. Please search your soul, talk to your friends and family, and review the numbers. Then cast your vote.

 

*Modern Healthcare. Lack of antigen test reporting leaves country ‘blind to the pandemic.’ September 16, 2020. As this article explains, rapid antigen tests produce results in minutes on-the-spot and outside of the nation’s lab networks. Many organizations administering these tests do not have an easy way to send results to public health authorities. This contrasts with PCR tests which are sent to labs that return results to ordering providers and public health databases in a matter of days.

Uncertainty and Innovation

 “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.

The Calm Before The Storm

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.

 

 

Coding the Coronavirus

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.

An Invitation

Welcome to the new Intrepid Ascent website. We hope it provides a better way to share our work, ideas, and enthusiasm with colleagues and friends. This page – Thinking – is an invitation to conversation on our shared journey. I encourage you to respond to any thoughts that stir you here by reaching out to members of our team or by sending us a message at hello@intrepidascent.com. We’d love to hear from you.

As you’ll see if you click around the site, our original focus on health information exchange has matured and grown in new directions. One path continues the climb toward the interoperability of IT systems based on common tech & data standards. Another leads to robust governance of enterprises with shared data assets. A third path branches into the territory of collaboration across sectors to address social determinants of health. And a fourth switchbacks from IT implementation to user experience, by way of quality improvement techniques that incorporate design feedback from the field.

While we maintain our youthful ambition to guide clients up their next mountain along these and other emerging routes, we find ourselves increasingly grateful for the community on the journey. We are fortunate to partner with inspired client teams dedicated to making the experience of health care and allied services impactful – especially for the most vulnerable among us. I hope this combination of passion and appreciation comes across in the experience you have on our site, on projects with us, and in many conversations to come.

See you on the trail.

– Mark

Five Questions for Damon Francis

Damon Francis, MD is the Chief Clinical Officer of Health Leads

What’s motivating your work with Health Leads these days?

We are really focused on leveraging data from health-related social needs initiatives to inform community wide decisions about social determinants of health. In the past, we focused entirely on the clinical interaction — making sure that patients were being asked about social needs and something was done about it. We are still focused there, but trying to make sure that our quality improvement efforts to reduce those needs reach into the community to improve the lives of people, whether they are patients or not. One of my favorite partnerships is with the WIC program in New York, where we have used data on barriers to enrollment from clinical referrals to make policy and programmatic changes statewide.

Who out there in your network is doing transformative work that you’re learning from, that we all could learn from?

I really love the work happening within the All Children Thrive network in Cincinnati. They have brought quality improvement methods and infrastructure to community wide challenges. They educate and empower community residents themselves on quality improvement, and they start in the neighborhoods that are most affected. They set a small number of community wide goals that motivate work across sectors, and they develop and refine policy and programmatic efforts to address social determinants. They have achieved some impressive results reducing hospitalizations and extremely preterm births that will change the trajectory of children’s lives for the better and is probably saving a few, too.

We hear a lot about what clinicians don’t like about health IT: all the clicks, the seemingly endless documentation, distracting alerts. But what do you and other clinicians want out of technology? What’s the positive vision?

The positive vision was there at the beginning but I think it’s been lost. I’ve always been intrigued by the Problem Knowledge Coupler idea – where the health record is a place to bring everyone’s knowledge together in a way that is organized to address the problems (and opportunities) of patients/clients. There is a doctor in Maine who has been using that model, with in house technology since the early 1990s.

I see EHR companies and some other health tech starting these principles more, so maybe we’ll get there. Software is eating the world, but if there is any place where the limitations of software are obvious it is in caring for and educating other humans. Businesses are often interested in cutting humans out of the picture, but the future is about closer partnerships and better teamwork among clinicians, programmers, informaticists, etc., not more specialization and not computers instead of people.

What are you reading right now for insight and inspiration?

I’ve gone back to reading a lot of fiction recently. The problems we are facing are rooted in history and too much of my world is about “fast-paced innovation” which is often ineffective for improving lives at best and automates inequity at worst, so I’m trying to counter balance that. Multi-generational novels told from a lot of different perspectives are my latest thing — There There, Homegoing, Pachinko, The House of Broken Angels.

Please share a personal ascent outside your professional life. We want to know!

I’ve recently started backpacking and last year went up to the continental divide in Bridger-Teton Wilderness in Wyoming on a 4 night trip. At the alpine lakes at the top we caught a few cutthroat trout, cleaned them, and cooked them over the fire. A high point in both the literal and abstract sense!

Damon Francis, MD is the Chief Clinical Officer of Health Leads, a national nonprofit that fosters innovative partnerships among health systems and community organizations to advance health equity. He is especially interested in the ways we can align care focused on individuals with strategies to achieve community health. Prior to joining Health Leads, Dr. Francis led population health initiatives related to HIV and homelessness in Oakland and the East Bay. He received his M.D. from the University of California, San Francisco, where he is now a member of the volunteer faculty.

We Believe

At a staff retreat earlier this year we decided to blow off some steam by white-boarding things that we’re against. It was highly therapeutic. Since then we turned around some of these ideas into positive statements about what we believe, issues on which we’re not only able to advise clients but on which we feel compelled to put a stake in the ground and take a position. We hope some of these statements resonate with you too!

-Mark

We believe that access to meaningful data expands human potential, seeding opportunities for insight and innovation, while the centralization of data for top-down decision-making limits opportunities for learning and growth.

We believe that technology can – and should – make the experience of health care and allied sectors better for both providers and consumers. This means that technology fades into the background, enabling meaningful interactions.

We believe in the integration of health, human, and social services to address individual’s whole person needs, and in harnessing technology to enable collaboration across sectors.

We believe that technology adoption requires proactive leadership for change management. Such leadership identifies priorities that guide actions through potentially messy transitions, engages stakeholders early and often, and listens to user experience – remaining open to recalibrations along the way. Ultimately, the sustainability of scaling up technology requires learning from experience, building authentic connections, and prioritizing depth before breadth.

We believe that there should not be a digital divide in health care. Safety net providers and the people they serve deserve the same quality of technology and access to data found in advanced health systems. As Americans move from uninsured to Medicaid to commercial insurance status and back, from community health centers to private practices to hospitals and back, their data must travel with them.

We believe that people own their health information and everyone else is a data steward. As such, health information should be treated as a valuable resource to be protected and enhanced at each phase of its lifecycle.

We believe in standards-based interoperability between IT systems and we are against competitive information blocking.

We believe in shared technology infrastructure, services, and governance whenever possible to enhance value, control costs, and support health improvement at the community level.