The Medicaid renewal process has revealed a stark digital divide that threatens to deepen health inequities. Even as some states raced to implement automated renewal systems (known as ex-parte), more than 20 million people have been automatically removed from Medicaid since May 2024, with many eligible individuals struggling to navigate the renewal process. This situation disproportionately affects vulnerable populations, including low-income families, people of color, and those with limited English proficiency, digital literacy, and/or access to technology.
It serves as a stark reminder of how technological solutions, if not carefully implemented, can deepen rather than bridge health inequities.
The human experience: stories from those navigating renewal
To truly understand the impact of the renewal process and the potential to improve the process and experience for all, we must listen to the voices of those directly affected. U.S. Digital Response (USDR) conducted in-depth interviews with families across the country navigating the Medicaid renewal journey. By listening to the lived experiences of those going through the renewal process, our team was able to illuminate the real impact of inefficient processes and opportunities to make change. Some of the stories include:
- Ashley, a single mother, faced multiple confusing office visits and experienced prolonged anxiety due to unclear documentation requirements. Her story highlights the need for more intuitive, user-friendly digital systems.
- Kendra, caring for an elderly parent on the Medicaid Waiver program, stressed over timelines and potential loss of coverage. Her experience underscores the importance of clear, accessible digital communication channels.
- Joe and Kathy, parents of four children on Medicaid, struggled to understand notices and relied on a community organization for help. Their story emphasizes the need for plain language in digital communications and the potential for technology to facilitate community support networks.
“Nobody tells you how it all really works. I just get this thing in the mail, and I mean there's no clear understanding of how it all works.” - research participant
These narratives reveal a common thread: despite attempts at digitization to improve service delivery, the current system often fails to meet the needs of those it aims to serve. The challenge lies not just in implementing technology, but in ensuring that it is accessible, understandable, and truly beneficial to all users, regardless of their technological proficiency or socioeconomic status. Common pain points included:
1. Lack of clarity on process causes worry
Participants did not know what to expect and when, and the stakes were high, leading to confusion at the outset of the process that persisted throughout.
2. Inability to get answers fuels frustration
After phone waits of 1-2 hours or taking trips to the Medicaid office, sometimes questions are not answered, leaving people increasingly frustrated.
3. Lack of customer care can be degrading
Undignified service can be perceived as degrading, disrespectful (e.g., rude, no callback, no answers to questions in office), and burdensome (e.g., re-submit lost documents).
4. Inability to track status increases work
Participants expressed confusion about the status of their submission (whether everything was received and if/ when being processed), which added stress and increased work: more calls/visits due to lack of clarity.
5. Contradictions amplify anxiety
Interviewees received letters that contradicted the other information they had received or found that the website & app had inconsistent and/or incorrect information, leading to more confusion, distrust, stress, and burden to seek clarity, as the stakes are so high.
Technology as a double-edged sword
In our quest to modernize the Medicaid renewal process, we find ourselves at a critical juncture where technology presents both immense opportunities and significant challenges. As we harness digital tools to streamline processes and improve access, we must remain acutely aware of the potential to inadvertently widen existing inequities.
On one hand, automated renewal systems promise efficiency and consistency. On the other, they risk embedding and amplifying biases if not thoughtfully designed and monitored. Over-reliance on digital platforms without adequate alternatives can lead to digital exclusion, potentially leaving out those without reliable internet access, language proficiency, or digital and health literacy - often the very populations most in need of Medicaid coverage.
The collection and use of personal health data, while potentially beneficial for streamlining renewals, also raises critical questions about privacy and data security. For vulnerable populations already at risk of various forms of exploitation, the prospect of their sensitive health information being misused is particularly concerning.
Technology for health equity
However, these challenges should not deter us from leveraging technology's potential to advance health equity. When thoughtfully implemented, digital solutions can be powerful tools for positive change. Proactive digital outreach, utilizing multi-channel communication strategies, has shown promise in several states.
"You hear it on the radio: make sure you watch out for the renewal, and mail back the forms that you have to fill out," one participant said. This multi-pronged approach ensures that crucial information reaches beneficiaries through various channels, increasing the likelihood of successful renewals.
User-centered design principles have also yielded encouraging results. Online renewal portals with pre-populated forms and intuitive interfaces can significantly simplify the process for users.
"Some information is prefilled. We are like, 'Any changes? Nope.' And we put submit. It is really quick." another participant reported. Such streamlined processes not only save time but also reduce the cognitive burden on beneficiaries, many of whom may be dealing with complex health issues or life circumstances.
Data integration and predictive analytics, when implemented with robust privacy safeguards, offer the potential to proactively identify individuals at risk of losing coverage. This approach allows for targeted outreach and support, potentially preventing coverage gaps that could have severe health consequences.
Human-centered innovation
As we navigate this digital transformation, we must anchor our efforts in human-centered innovation. This means involving diverse communities in the design and testing of technological solutions, ensuring that we're meeting the needs of all users, not just the technologically savvy. It also involves investing in digital literacy programs to empower vulnerable populations, enabling them to navigate online systems with confidence.
Multilingual and culturally appropriate digital tools are non-negotiable in our diverse society. Every technological solution must be accessible and relevant to the varied communities served by Medicaid. Furthermore, transparency and accountability must be built into our systems, with ongoing monitoring and public reporting on the equity impacts of our technological innovations.
Perhaps most importantly, as we embrace digital solutions, we must resist the temptation to view technology as a panacea. Human-to-human support remains invaluable, particularly for complex cases or individuals uncomfortable with digital interfaces. A hybrid model, combining the efficiency of technology with the empathy and nuance of human interaction, offers the most promising path forward.
Technology as a force for health justice
By centering the experiences of the most vulnerable, fostering inclusive innovation, and maintaining a commitment to equity, we can use technology not just as a tool for efficiency, but as a means to build a more just and compassionate healthcare system. By doing so, we move toward a world where technology genuinely advances health equity, ensuring that no one is left behind in the digital era of healthcare.
The journey of Medicaid renewal offers valuable lessons for the broader healthcare system and beyond. It challenges us to reimagine how we design and implement technological solutions, always with an eye toward justice, equity, and the fundamental dignity of every individual. In this way, we can ensure that healthcare innovation becomes a powerful ally in the ongoing struggle for health equity and social justice.
Photo by Nappy on Unsplash
