The United States Department of Health and Human Services has plenty of chief medical officers and other clinical leaders across its sprawling agencies, staff divisions, and operating divisions. Chief data officers, former health plan executives, PhDs in health policy, and entrepreneurs-in-residence abound.
But HHS does not have a single paid senior staff member dedicated to the voice of the patient.
“We’re all patients,” some might say. But the reality is that humans advocate for their primary interests, and usually that’s the interest of the position for which they are paid.
HHS gathers patient input through listening sessions, advisory councils, tours and by receiving the relentless outreach of patient advocates and caregivers. Most of this participation by patients and their advocates is unpaid, with minimal reimbursement of expenses in limited cases.
Does it matter that this work is unpaid?
Yes. In America, we pay for value. If we are not paying to ensure the voice of the patient is incorporated into the policy decisions governing 20 percent of the US economy, then our Federal Government is saying, loudly, that it does not value the voice of the patient.
It’s a good thing to care about provider burnout. And it’s important to have so many clinicians represented in policy change and administration. We have a critical shortage of these amazing professionals, and they are the only way we have a healthcare system at all. But nearly two-thirds of physicians say they are burnt out in large part because they can no longer do right by patients—because they are suffering “moral injuries.” Because the amount of data entry and other administrative burdens prevents them from spending more time with patients. Because compressed reimbursement through CMS and other behemoth insurance companies pushed them to be employed by massive health systems that schedule them a patient every five minutes.
Patients, patients, patients.
Despite all of the money poured into digitization, patients still can’t get their records. And if they do, they and their caregivers have spent countless hours gathering them, and are still forced to serve as the “paper bridge” for care coordination between primary and specialty care doctors. Many of these patients get their records only to see they contain incorrect diagnoses and other errors and have no way to correct them.
Other patients are prescribed life saving treatments or those that will dramatically improve their quality of life only to be denied coverage by their health plans. Many of them go into crushing debt to search for answers on their own, or just to stay alive.
Is consumerism the answer? Only if you think a dual-enrolled, chronically ill, end-of-life patient is going to shop around for the best deal on an MRI, or if their specialty care doctor will accept an MRI from an unaffiliated clinic. Only if you think an undocumented teenage mother is going to search for the closest and cheapest clinic instead of going to the only place she knows she’ll get help—the emergency department. Only if you think struggling families are all able to fully fund their HSAs.
We still have plenty of work to make it easier for clinicians to practice medicine, but we are light years behind on making our healthcare system a place where patients win.
A chief patient officer would be a first step in ensuring the US Federal Government, the largest payer in the world, will do what’s right for patients, not just preserve the interests of the existing, almost catastrophically broken system.
Kat McDavitt is president of Innsena and CEO of the Zorya Foundation.
Lisa Bari is CEO of Civitas Networks for Health.