This is one of the most momentous and fraught times in the history of American health care. How did we get here?
For Rebecca Onie, JD, Co-Founder and former Chief Executive Officer for Health Leads, it began in 1995, when she talked with physicians and nurses at Boston City Hospital who told the same story, again and again:
“Every day, I have patients come into the clinic. The patient has an asthma exacerbation, and I prescribe a controller medication. But know that the real issue, is that this person is living with 12 other people, in a dilapidated brownstone, with asbestos and mildew. And I don’t ask about those issues, because there’s nothing I can do.”
“This is a story I’m sure many of you know well, and it just seems that it shouldn’t be so complicated to design a health care system — or, for that matter, a doctor’s visit — around what people actually need to be healthy,” Onie says. “But I’ve had hundreds, probably thousands, of conversations, with health care executives and providers across this country, who say that when it comes to their patients’ most basic resource needs, they practice a ‘don’t ask, don’t tell’ policy.”
It’s now widely recognized that just 10% of health outcomes are tied to clinical care, Onie says; up to 70% are tied to social and environmental factors and the behaviors so influenced by them. Health Leads was born of these conversations with physicians in 1995, and this fundamental understanding of what drives health. For 20 years, it’s worked to connect patients with those basic resources, like food, heat, electricity, that they need to be healthy, and more recently, has equipped thousands of health systems around the country with the tools that are necessary to do the same thing. What’s important is that we know these connections work. A Mass General research study published in JAMA Internal Medicine confirmed that addressing patients’ social needs — in that case, through Health Leads — yielded significant improvements to LDL cholesterol and blood pressure at a level equivalent to introducing a new drug.
“But to me, this begs the question: Why don’t we do what we know we need to do to deliver health in this country?” Onie asks. If we are honest, most of the noise in health care these days is about the same old stuff: drug prices, incentive structures, coverage. Have we made any progress at all, Onie wonders?
Consider the issue of marriage equality. In 2003, the Massachusetts Supreme Court became the first court in the country to uphold same-sex marriage. But in 2004, 11 states passed referendums banning same-sex marriage — after 20 years of advocacy, and a billion dollars of philanthropic investment in marriage equality. That’s when Patrick Guerriero and other marriage activists took it upon themselves to hold up the mirror and identify the 10 ways they’d failed. Through that conversation, a new marriage equality movement was born. And within 11 years, 58% of Americans supported same-sex marriage, and the U.S. Supreme Court upheld marriage equality, citing the Constitution.
For those of us committed to creating a more equitable, rational, health centric system, we need to know — how does a deeply committed country shift its core beliefs in just 11 years, Onie asks? With marriage equality, what were the 10 learnings that shifted the trajectory of a movement? Guerriero answered:
- Becoming bloated with bigger organizations and bigger budgets, but fundamentally focusing on the wrong thing
- Having lots of “friends” but not holding them accountable
- Using language that worked for gay people, and only gay people
- Waiting for a big federal policy epiphany, instead of doing the hard work in states
- Playing defense, never offense
- Working in silos and protecting its turf
- Paying lip service to diversity, with huge blind spots
- Needing funders to be less passive and more aggressive, insisting on cutting-edge advocacy
- Needing to shift resources and messaging to create authentic bipartisan support
- Using old models of communication and mobilization
“I’ll be honest — when Patrick told me this, I had a serious ‘oh, crap’ moment. Because he was describing exactly where we are in health care these days,” Onie says.
First, Onie argues that in health care, we too are focused on the wrong things — not just when it comes to our policies or our budgets, but also when it comes to our patients. She describes when a patient came into a large academic medical center in Baltimore who was losing lots of weight; the doctors huddled up, figuring out which blood tests and which metabolic panels to run, when one of the Health Leads–trained advocates asked aloud: What if he’s hungry? “It turned out he had been kicked out of his housing 4 weeks before and hadn’t eaten in weeks. He said he was so relieved that someone finally asked,” Onie says.
Somehow, in health care, we still so often ask the wrong questions; somehow, we’ve created a health care system where asking a patient “Are you hungry?” is so far outside the boundaries of what counts as health care that we fail or forget to ask altogether. “We’ve created a health care system where CMS launches a $157 million pilot that randomizes hungry patients into an intervention or non-intervention control group. That means some patients who are hungry get food, and some get information about food, with the ethical justification that doing nothing for hungry patients is standard and usual care in the United States,” Onie adds.
The second principle that hits home for Onie is that in health care, we are talking to ourselves. Marriage equality activists ran focus groups with Iowa farmers asking, do gay people have a right to marry? The farmers said, “Absolutely not — but they should have the freedom to marry.” “Because in our country we have a deeply ambivalent relationship with rights. But we love our freedom. So the right to gay marriage became the freedom to marry the person you love, and the tides of political opinion and public support began to shift. And the truth is, in health care, our language is a mess,” Onie says.
Health Leads asked two groups — one of African American Democrat women, and one of white Republican women — if you had $100 to spend on delivering health to your community, where would you spend it? They allocated their dollars identically: 19% on affordable housing, 14% on access to healthy food, 14% on affordable child care. “We as a country are incredibly fractured when it comes to health care. But what if we are, or could be, unified when it comes to health?” says Onie.
The third principle that resonates is that health care has major blind spots. Many major institutions are rushing to pledge their commitment to health equity. But health equity is about the thousands of small decisions that we make every day in health care. In September of this year, a mother of a child with Down syndrome, who could only tolerate hot food through a feeding tube, showed up at an academic medical center in a segregated, deeply poor community, totally panicked — she had been struggling to pay her bills, and the gas company had cut off her gas. “States have a medical utilities program, where a patient can get utilities turned back on for 30 days. But in this clinic, the providers would only sign medical certification forms for asthmatic patients with nebulizers. The nurse refused to sign the form, and the mother was forced to choose between paying her rent, and paying the gas bill,” Onie says.
“We make choices every day that bring us closer to, or further from, a more just, more equitable, more rational health care system. And the question to me, is, are we willing, like gay marriage, to look in the mirror and be honest with ourselves, and to take its lessons as our own?”
From the NEJM Catalyst event Expanding the Bounds of Care Delivery: Integrating Mental, Social, and Physical Health, held at Vanderbilt University Medical Center, January 25, 2018.