Heidi Allen on American Healthcare and the People Left Behind
The School of Social Work professor has seen some of the worst inequalities in American healthcare up close and is passionate about finding solutions.
The past year has seen a series of well-deserved recognitions for Dr. Heidi Allen, Associate Professor of Social Work (bio). Last July, Allen was named a member of the National Institutes of Health’s Health Disparities and Equity Promotion study section. In January, she received the 2019 Social Policy Researcher Award from the Society for Social Work and Research. And in February came the announcement that she is helping establish the Policies for Action Research Hub, based at the Harvard T.H. Chan School of Public Health, which aims to inform Medicaid policy.
This last is perhaps the most validating for a self-professed policy wonk like Allen. Through the hub, funded by the Robert Wood Johnson Foundation, she and her colleagues will study the effectiveness of Medicaid relative to private coverage, something that has always been difficult to do rigorously.
“My research with the Oregon Health Insurance Experiment has shown that Medicaid is really wonderful in many aspects, and in others, it isn’t quite doing what we want it to,” Allen said recently in her office at the School of Social Work. “People use our study findings as an argument for why we shouldn’t expand Medicaid, but private insurance hasn’t been put to the same test.”
Obstacles to creating such a test include data access, mismatched datasets, and the patchwork nature of insurance markets. People who enroll in public coverage are fundamentally different than people who get health insurance through their employer, and these differences may drive outcomes as much as type of insurance. However, Allen and her colleagues took note in 2014 when some states expanded Medicaid and private insurance for low-income, uninsured citizens using an arbitrary poverty cut-off that determined the type of coverage one qualified for. The simultaneous roll-out of both programs allowed researchers to compare individuals right above and below the cut-off, where only a fraction of income divides them. Leveraging an all-claims dataset and income data from Colorado, Allen and her co-investigators will be comparing public and private insurance on measures of access, care, use, quality, and costs to individuals and society.
“We have this wonderful dataset to answer a novel research question in a way that we haven’t been able to do before,” she said. “I’m really excited about the Medicaid Hub grant because it’s mixing what I love best. We’ve got high-quality empirical studies that are going to produce compelling evidence about the efficacy of Medicaid compared to the marketplace. We’re also funded to do less traditional research to help policymakers make good decisions in the moment.”
This work aligns strongly with Allen’s research portfolio, in particular her work as a lead investigator on the aforementioned landmark Oregon Health Insurance Experiment, the first randomized trial to examine the impacts of health insurance expansion on uninsured adults, which has led to publications in high-profile journals such as Science, the New England Journal of Medicine, and Health Affairs.
With a cerebral approach and a growing curriculum vitae, Allen may seem like an erudite academic. Yet her heart is always leading her head, and all of her work is informed by first-hand witness to the gross inequities of the American healthcare system.
Originally intent on becoming a therapist, Allen worked in a psychiatric hospital while completing her MSW. However, she soon questioned whether the hospital was providing patients culturally competent care. It wasn’t uncommon, for instance, for patients with little or no English skills to be provided care without translation services. She also found discomfiting the disparities she observed in how white patients were cared for compared to patients of color, and she noticed that hospital policy equated gay children with sexual predators, isolating them from same-sex peers. Her MSW course work, however, opened her eyes to how she might work for progress.
“My very first class was introduction to social policy,” Allen told us. “I was born and raised in Idaho, not a real hotbed of progressive social policy, so I wasn’t trained to see how you could go into policy and do really big things to change lives. But when I took this introductory social policy class, I thought, ‘I don’t want to just be a therapist. I want to change the policies, not encourage people to adapt to systems that aren’t working.’”
With this new perspective and an education in social work, Allen convinced the hospital’s CEO to let her conduct surveys of her colleagues, which found overwhelming evidence that they shared her apprehensions. She had hoped that identifying the shared concerns of the staff would allow her to form a committee to address them. All of her hard work, however, was dashed when new management arrived with a business-first mindset and a penchant for layoffs, which would soon produce horrific results.
One night, police brought in a man for a medical hold after he failed to pay a bus fare and lashed out at the officers. The man’s family didn’t speak English and none of the staff knew how to access an interpreter. The severely diminished staff-to-patient ratio made it impossible for the few available nurses to handle the situation safely. They wouldn’t learn until it was too late that he’d boarded the bus on his way to fill an anti-seizure prescription. Or that the anti-psychotic medication they’d administered him did nothing to address what was essentially a medical delirium related to his seizure disorder, and as a result the patient became violent. The staff called the police who eventually shot and killed the patient.
Beleaguered by scandal, the hospital closed rather than make necessary changes. Allen began working full-time as a social worker in the emergency department of a general hospital, where the shortcomings of the American healthcare system were on display daily. Years later, during her popular November 2017 TEDMED talk, which has received thousands of views online, she described an emergency department as “an environment that often serves as a barometer of how well the healthcare system is working. Or not working, as the case may be.”
“The issue of health insurance has certainly been personal.”
Allen went on to complete a PhD while working in health policy and research before joining the School of Social Work in 2012. Her personal and familial experiences with the healthcare system infuse her work, especially with regard to access. She herself once suffered a credit-shredding hospital visit as an uninsured undergrad, hampering her financial well-being for nearly a decade.
“You see the compounding problems that face low-income people. I didn’t have money, and poor credit as a result of hospital bills meant I had even less money. Since then, I’ve been blessed. I’ve always had jobs with good health insurance,” Allen told us. “That’s not true of everybody in my family. It wasn’t true for my dad, who spent years uninsured until he got insurance through the Affordable Care Act. It certainly wasn’t true for my sister, Rachel.”
A few years after Allen joined Columbia, Rachel, a single mother of four who couldn’t afford health insurance, was diagnosed with cancer of the lungs. Then cancer of the kidneys. With stage IV cancer and no treatment options, Rachel died just weeks later at the age of 44.
The doctors couldn’t say whether Rachel would have survived with timely treatment. They did confirm, however, that Rachel’s cancer could have been caught much earlier, in the many months prior to her death when she was plagued by mysterious maladies.
Without insurance, though, these warning signs were overlooked. Rachel’s children lost their mother. Allen lost a sister.
“I don’t know if access to affordable insurance would have saved Rachel’s life,” Allen said. “The problem is, I also don’t know that it wouldn’t have. This shouldn’t be something that families have to wonder about. Did my loved one die because they were poor?”
Of course, whereas the lack of health insurance can be devastating, finally obtaining it can be affirming, which has motivated Allen in her work as an advocate.
“So many people we interviewed who gained Medicaid said, ‘I feel like a real citizen for the first time. I feel like having this card makes me somebody,’” she said, reflecting on the Oregon experiment. “Considering the federal government subsidizes everybody’s health insurance—including employees, veterans, government employees, Medicare, and Medicaid—why are we withholding that from a small group? What does it say that we withhold that from them? So I love to get on my soapbox. I love to corner people at parties to talk about how everybody should have healthcare access.”
Allen hopes her work, including the new Policies for Action Research Hub, can give policymakers the insights necessary to help increase access, improve health outcomes, and save lives. All of which might also help the millions who are currently uninsured feel like “somebody” for the first time.