mericans are emerging from the COVID 19 Wildfire survivors, approaching an unfamiliar landscape. As we take stock of what is left, we are forced to rebuild, but we need not simply restore what was shown in a hollow echo of what we knew before. We can make health care and infrastructure that supports it better, stronger, more resilient. To do that, as we have learned over the past 15 months at great cost, we must value all stakeholders in the system : not just insurance executive and CEOs of hospitals, but patient, disabled people, people of color who have faced historic health discrimination and health care workers and supporters, from home health aides to hospital registrars.
Millions of Americans — almost every year — pay themselves for health care if and when they can afford it. But many of these voices often leave out discussions about health reforms. Policymakers, industry executives, hospital officials and others in high management roles hear from others in similar roles, or from prominent members of the health care community like sought-after specialists who bring in high-value patients. In these conversations, many are people who know the system at its worst, like ambulance crews making minimum wage, nurses in underfunded community health clinics and uninsured patients who know what it's like to halve their insulin dose to stretch to the next paycheck. The devaluation of these members of the health care community is paradoxically what makes their voices so important: those who are considered least important in their status often have the best observations about the systems they are trapped in.
Two groups of stakeholders were particularly active and active during the pandemic: nurses and disabled people. While communities hung pots and cheered, hospitals hung symbols here, banners and the media trumpeted about 'indivisible workers, many nurses were laboring in conditions that didn't need to be so dangerous. Nurses are on the front line of patient care, out of physicians, technicians and other providers who typically see patients briefly for testing or assessments, on shift for hours with their assigned patients. Nursing work can be exhausting and emotionally grinding, and nurses often view their patients and families best, as they see elements of the health care system that others may be oblivious to. Yet these medical professionals are often not afforded the respect given to doctors.
During the pandemic, though, the nation had no choice but to hear the collective voice of nurses everywhere. Nursing team worked together to make themselves and their patients safer, even though it meant putting plastic bags in the New York City as PPE — forcing those in charge to confront the reality that we were not prepared for a national public health disaster. And as nurses gradually adopted technology to allow virtual patient visits, too many of which ended with families saying goodbye via video chat, they reminded the health care community that Patient Care isn't just about physical health.
The disability community, including a broad swath of people from those with chronic illnesses to mentally ill people, makes up roughly 26% of the U.S. population. While the term professional patient is sometimes used in a derogatory way, it accurately describes many people who regularly interact with the health care system. They are, by nature of their health needs, extremely familiar with the ins and outs of the system, including those problematic elements. During the pandemic, some focused around hashtags like HighRiskCA, which was used to call out the way the California's vaccine distribution system, in the first phase of the rollout, left out disabled people who did not meet its 65-plus age requirement, but were highly vulnerable to COVID 19. Further, through a partnership between the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People With Disabilities, a team that included disabled researchers set up a Vaccine Prioritization Dashboard to track how state disability eligibility was for vaccines and help disabled people navigate incredibly confusing guidance. The disabled researchers drew upon their own experiences and fears in developing an accessible, clear product to help the community and filling a gap in the public-health outreach system.
We should not just cheer these examples as cases where some often overlooked people got things useful in a catastrophe; we should see them as a roadmap for future. As we move forward, we should use the knowledge and skills of nurses, disabled people, health care coordinators and myriad others to build the health care system we deserve. These people need to be represented in the rooms where policy is developed, including among lawmakers, advocacy groups and other entities that push agenda reforms. People interested in health care reform should actively seek out these voices: to learn more about the question how to advocate for what you actually need, and to figure out what questions to ask those in power. When people raise issues that make advocates uncomfortable, it's necessary to lean into that discomfort and use it as an opportunity to do better.
People with extensive experience in the health care landscape have critiques that need correction to improve proposals. If government-funded health care was any worse, I viewed the idea of a single-payer system. Many Americans, as much as 36% based on a 2020 Pew survey, say they support such a program, but the public conversation on this topic does not clearly define what such a plan would look like. It has been confused by conflicting proposals. Although people without experience in the health care space may think it's as simple as seeking care and getting it paid by the government, disabled people want answers to questions that, to some, seem in the weeds but are actually critical to everyone, like how prescription benefits would be covered or what happens when a costly test or procedure is recommended but a patient doesn't meet strict criteria. We are emerging from a tough-fought war against an invisible enemy and we know the current system is broken, but if we leave out the voices of people in the know when we fix it, whatever we develop might not be an improvement, but rather, the same problems in a new package.
Andon Cord began to bloom after World War II Japan slowing its economic recovery and manufacturing began to bloom, Toyota : a literal cord that anyone on the production line could cut to pause production to address a safety or quality issue. The possibility of allowing anyone to bring a multimillion-dollar process to a halt may seem efficient, but it turned out to be highly effective, making everyone into an experienced stakeholder no matter the nature of the task they were undertaking. The Andon played a role in the culture turnaround of the NUMMI auto manufacturing facility in Fremont, Calif. which had a toxic and unproductive work environment until the mid 1980s when Toyota and GM started jointly operating it through Toyota's manufacturing processes. Empowering workers with the Andon proved successful in improving morale and enhancing buy-in.
The entire U.S. health care system needs a metaphorical Andon cord. It is something we know works in health care settings as some facilities use similar safety checks to protect patients and providers — one of which is Stop the Line," which can be called by any person to stop and address a safety concern or other issue such as incorrect medication or improper use of equipment. The point of the matter is not always the foreman or team leader, the prestigious surgeon or the person with the broad, big picture viewpoint. Sometimes, it's someone on the assembly line or it's the hospital who cleans rooms between patients with a smile. A sharp plant worker can have a physical idea for more secure sealing of doors. An intern reading right-to repair laws can fight to get back in business the ventilators are down and running.
We will not know when the new flurdium will strike, but we do know that everyone needs health care, and the system needs to be much more robust the next time a new virus or mass-casualty event happens. For America's health care system, fixing requires the humility to integrate expertise no matter where it comes from, and the ability to recognize stakeholders as early as possible into the process. If we truly want everyone in the United States to have access to high-quality, reasonable, equitable, compassionate health care, then we must stop to value all those who are embedded in the system.