Automation and the Fight for Healthcare

The Trump administration recently announced plans to use AI to decide whether Medicare enrollees in some states can receive medical care through a process called prior authorization. Private insurers have been using automated prior authorizations to deny care for years, including for Medicare Advantage plans. But the move is deeply unpopular. With opposition from doctors, patients, lawmakers, and the general public to the rollout of privatized automated prior authorization denials in Medicare, there is a chance to push back against this expansion of automation.

Policy responses to new uses of automation often focus on addressing the immediate impacts to individuals, whether it’s to fight denial of services, privacy violations, or lack of transparency. But this focus, while important, ignores significant collective harms. The introduction of automation into public healthcare also circumscribes people’s power to fight for their right to care.

The use of automation widens the gap between people’s access to care and the political question of their right to care. People’s efforts to access the care they need become focused on technocratic questions about eligibility and the technology that determines it, rather than on the political choices that reduced a right to care to a question of who deserves it. In other words, automation has a depoliticizing effect that makes it harder to build collective power for access to healthcare.

Our new report at Upturn explores this phenomenon by studying the history and current use of automation in Medicaid Home and Community-Based Services. The research provides valuable lessons for the ongoing fight against automation. It’s essential for those with technology expertise to resist being drawn into technocratic debates over fairness and accuracy and instead to use their expertise to expose the political nature of automation.

Automation in Medicaid home and community-based services

Medicaid home and community-based services (HCBS) supports over five million Americans to get the care they need to safely live at home or in their communities. These services include assistance with dressing, eating, medication management, and mobility. Expansion of HCBS was hard-won by disability advocates, but states are under constant pressure to limit spending to keep costs below what a nursing facility would require.

Automation became a key part of the government’s efforts to minimize costs. It essentially creates a dial that states can turn to change program eligibility in order to control spending, without going through a public comment process to change written regulations. Implementing cuts this way hinders organized pushback, since information about the underlying algorithms is often inaccessible due to proprietary restrictions and technical complexity. Further, legal services advocates’ capacity is directed towards appealing denials on an individual level, leaving little time to collectively address the underlying political problem—and because many free legal services organizations are barred from engaging in class-action lawsuits.

Privatization, lack of transparency, and the myth of objectivity and fairness

The use of automation and the reliance on private companies to build it gives the government cover to implement its cost-cutting goals while claiming its denials of care are rational and fair. Meanwhile, our analysis of five states’ eligibility algorithms revealed significantly different results across states for the same person, measured against the same federal requirement.

In Nebraska, we obtained meeting minutes between the state Medicaid agency and the consultants building its HCBS eligibility algorithm that show the consultants offering to tweak the algorithm to make a smaller percentage of current enrollees eligible if the state wished. One consultant is quoted as saying, “the idea of… eligibility being clear cut is a myth.” However, in public-facing materials, these state agencies emphasize the ability of their algorithms to identify the “right people” who need services.

Clearly, these automated tools are not making decisions based on “objective measures” of a person’s needs, and the state agencies and technology vendors who build them know this.

Vendors’ proprietary claims create barriers to accessing basic information about how these tools work. Transparency about their design and function is an essential first step toward challenging technology’s effect of turning the political struggle for the right to healthcare into a technocratic debate over how to “accurately” measure what someone needs. As part of our research, public records requests were submitted to all 50 states, but documents were obtained from fewer than half. Access to the algorithms themselves was granted in only five states — three through our public records requests and two through documents previously released by state agencies. Four states explicitly denied requests for records, citing the proprietary interests of the private vendors that built the algorithms.

Decisions about how to customize eligibility algorithms for different states often take place behind closed doors between state agencies and private consultants, as in the Nebraska example above. The public should have access to the algorithms that determine eligibility for essential home care, and should be able to comment on the processes states use to implement them. The privatization that almost always accompanies automation channels public funds into private pockets, while reducing accountability and transparency.

Automation circumscribes our ability to fight for healthcare

Automation in public healthcare creates systemic issues and further complicates collective action in a context where people’s primary protection is through individual rights to appeal. Individuals who are denied or terminated from Medicaid HCBS can request a fair hearing and appeal the decision to regain benefits. But these appeals are burdensome, free legal assistance is limited, and people are often denied access to information about how the automated decision was made, violating their due process rights. Crucially, even when individuals win their cases, the algorithm does not change, leaving the same problem for others to appeal.

Collective challenges to automated HCBS determinations can address systemic harms caused by automation and help build the relationships and coalitions needed to fight for expanded access to home care. This is the approach advocates took in Arkansas in 2016 to fight the “RUGs” algorithm after its rollout slashed care hours for nearly half of the people on the program. And in 2018, Missouri’s Medicaid agency published the first draft of a new HCBS eligibility algorithm—an unusual level of transparency. This openness enabled legal advocates and home care providers to collaborate with Upturn and colleagues at the Benefits Tech Advocacy Hub to audit the proposed algorithm, before it went into effect.

The audit projected that the algorithm would cut off benefits for more than half of those previously receiving vital home care. Through advocates’ engagement with the state agency, the final algorithm ultimately removed far fewer people from benefits, though some long-time recipients still lost access. This is because the underlying issue remains: these algorithms are designed to draw a subjective line between those deemed deserving and undeserving of care.

Policy proposals to address the harms of automated prior authorization have thus far focused on requiring human review or increasing transparency by requiring that providers post information about prior authorizations. While these efforts may address some individual harms, they do little to build the collective power needed to fight for universal healthcare. As long as technologists and advocates focus only on tweaking or mitigating the harms of technology, they remain confined within the limits of the existing system, perhaps improving it slightly for some, but doing little to transform it for everyone. Harm reduction efforts must be paired with an organized effort to build power for real, systemic change.

The solution is not “fairer” automation, or automation at all, but building coalitions and organizing for a universal healthcare system that includes universal home care. The political will to make this happen will only materialize if we collectively demand it. This is what People’s Action’s Care Over Cost campaign does in challenging private insurance denials. It is also the goal of ongoing work with legal advocates and community organizations that are confronting HCBS denials and working to prevent the encroachment of automated prior authorization into Medicare.