There are a few things that we know about the American health care system: It is exceedingly expensive, so health insurance is typically a necessary (though not always sufficient) precondition to accessing medical care. It is exceedingly fragmented, placing high health literacy demands on patients navigating its complexities, with this health literacy being unevenly distributed and thus having the potential to breed inequities. And it is highly privatized, such that most Americans’ health coverage decisions are in the hands of insurers that must thread the delicate needle of ensuring access to medically necessary care while maintaining fiduciary responsibilities to shareholders.
As an AcademyHealth research champion, our goal is to foster connection between researchers and policymakers in local communities and translate evidence into action.
The Issue of Coverage Denials
It is little wonder why health insurance coverage denials – whether denials of prior authorization (pre-treatment) or claims (post-treatment) – are such an American experience, and can necessitate onerous appeal processes that many people do not pursue, delayed or foregone medical care (potentially resulting in worse health outcomes), and disrupted finances (whether medical debt or the postponement of non-medical purchasing). In my forthcoming book Coverage Denied: How Health Insurers Drive Inequality in the United States, I wanted to explore both the politics underlying this widespread practice and how it upends patients and physicians’ lives.
In fact, I find that 36 percent of my survey respondents experienced at least one such denial (typically multiple denials), which then fueled inequitable experiences of administrative burden such that lower-income patients are less likely than their more affluent counterparts to appeal at all and marginalized patients are less likely to prevail in that endeavor, and also lead half of denied respondents to delay medical care, often experiencing worsening symptoms during this time.
Appealing is far from a fruitless endeavor. In fact, half of those who appeal were successful. However, administrative burden – whether not knowing that they could appeal, not knowing how, or not having the time and other resources to do so – led many people to forego appealing, even if they might have prevailed. It is for this reason that I refer to this insurance practice as rationing by inconvenience.
That is, people are not denied care through final denial, but rather accumulated inconveniences that many – especially those on the margins – are unable to overcome.
In the 70 or so interviews I conducted with patients, most patients reflected on the American health care system and how easy it was for them to fall through its many cracks.
With growing attention to health insurance barriers – whether in the wake of the UnitedHealthcare events, recent cuts to health insurance access, or recent policies to introduce new prior authorization into traditional Medicare, where it has historically had a very narrowly circumscribed role – I have spent the last year or so speaking a lot with the media, including NPR Morning Edition, CNBC, and most recently, CBS Sunday Morning.
This shows the clear value of health services research in addressing this experience and why the field must communicate our work beyond academic institutions.
With this in mind, it then becomes my job – and indeed, my privilege – to highlight these stories and contextualize them in a way that we can make sense of the broader patterns in health care access, or lack thereof. It then helps to bring into stark relief what the implementation of new prior authorization might mean for this older individual for whom a cumbersome appeal process might strain what some scholars refer to as “administrative capital,” or how a state’s new oversight of artificial intelligence (AI) processing of claims and prior authorizations might reduce the likelihood of inappropriate denials and associated burdens of appealing.
Communicating your work: the value of leading with stories
There are a number of ways that I work to ensure my findings can resonate with a broad audience.
Lead with Stories. I went into the field and talked with patients, physicians, and others affected by health insurance barriers. (By “field” I mean I did a lot of phone and Zoom interviews.) I collected detailed stories, anecdotes, and more, and I always have a couple of particularly compelling or surprising quotes ready to go. You never know whether a journalist will use a single quote or do extended engagement with what you have to say, so it’s important to offer things that will make ears perk up and ensure that whatever they share will have an important takeaway.
Anchor Stories in Data. The plural of anecdotes is not data, but they can reinforce one another in powerful ways. I do my best to reinforce one cohesive story about a patient or physician perspective with three or four key statistics to repeat and re-contextualize (with a couple other facts and figures in the back pocket depending on where the conversation turns).
Keep the Goal in Mind. Unless specifically prompted to comment on something said or done by an administration official, I am generally careful not to name them because it may not serve the goal of conveying the scope of health insurance barriers. Politics is important to policy and I’m an expert in both and often speak out about policies to which I object, but context matters. If the issue transcends party lines (and this one does at the state level), don’t narrow the reach beyond what is necessary in the context of communicating about research findings. We often wear multiple hats, but we don’t need to wear them all at once.
Lastly, and the generalizability of this depends on the individual and the nature of the research, but I am not afraid to be vulnerable. Most Americans have a story of health insurance barriers and I am no different – in fact, reflecting on my own privilege while nevertheless struggling motivated me to put my academic “hat” back on and write this book in the first place! We all have a “why” for our research, it’s of interest to journalists and readers or viewers, and it helps to hammer home just why health policy change is so critical.
I have been grateful to have so many opportunities to not only raise the visibility of the findings from my book, but hopefully (and more importantly) to inform future policy formation in a way that would mitigate the administrative burdens that I and so many millions of others have experienced when seeking to utilize their health plans. If my work helps to reframe health insurance coverage denials as not simply everyday frustrations, but systemic practices and drivers of burden and inequity, I feel that these conversations – and my book – will have done their job.