A real “chicken and egg” dynamic is unfolding in health equity right now. Between evolving federal mandates and requirements from specific care plans, health enterprises are facing increasing demands to track the most significant barriers to care — and, specifically, to do this by collecting robust patient-reported data.
In theory, this should be a good thing. Collecting data on social determinants of health (SDOH) is, after all, the first step toward addressing the barriers that prevent patients from getting necessary care. In practice, however, it’s rarely that easy. Many leaders recognize that while they must ask patients about the forces that hold them back, they may not be able to offer a relevant solution.
On the patient side, this imbalance can be anywhere from uncomfortable to shattering. For a low-income single mother, disclosing that she doesn’t have the means to both care for her children and attend to her own health could be a deeply vulnerable experience. To have this disclosure met with an automated ‘thank you’ and no offer of assistance might irreparably harm her trust in the healthcare system that has promised to look out for her.
Beyond Analytics: How Sellers Dorsey is Hard-Coding Value into Medicaid Policy [Video]
How to turn analytics into actual policy outcomes.
If patients don’t have a clear understanding of what will happen with their self-reported data, they could be left wondering why they should share such personal information at all. That’s the problem now pushing many healthcare executives to ponder: How can we safely and responsibly ask patients to share sensitive information that we may not have the power to change?
This is particularly concerning as patients are often reluctant to disclose sensitive information, such as financial struggles or limited transportation, unless they are in critical need of help. If healthcare providers fail to respond meaningfully, they risk missing key opportunities to connect and support patients during these delicate moments.
Healthcare leaders must start with an understanding of the sensitive and evolving balance between data collection and patient support.
Acting on data
Inside an Automated Healthcare Practice: Redesigning Care Around People, Not Paperwork
By reducing administrative burden and redesigning workflows around human needs, it creates space for what matters most: connection between clinicians and patients.
The increased emphasis on SDOH data means there’s a new responsibility to quickly translate data into action. Healthcare leaders are clamoring for ways to quickly operationalize patient insights — overcoming healthcare’s damaging reputation for collecting enormous amounts of data and letting it languish.
The current wave of patient data collection has been mandated by bodies such as the Centers for Medicare and Medicaid Services (CMS), which aims to leverage the data to fuel research into the connections between social needs, health outcomes, and healthcare costs. Collecting patient data is a requirement, but it is also a key opportunity for every individual healthcare system to better understand their patients.
Patients are affected by multifaceted, interconnected barriers and needs — socioeconomic status, education, neighborhood environments, employment, and access to care all significantly impact their health. When analyzing this data, it is easy to understand the root causes behind health disparities in communities and plan more equitable and effective strategies tailored to the needs of those populations. Pulling that off, though, requires a tremendous degree of trust.
With a new administration in office, greater shake-ups and moments of uncertainty can be expected, including further reductions in Medicaid funding, support, and quality of care. Patients will likely lose coverage. They may face barriers they previously overcame. They may struggle with the acute sensation that their healthcare is opaque, bureaucratic, and not really designed for them. In these moments, establishing trustworthy avenues for patients to share their care barriers will be absolutely critical. If that trust is missing, enterprises risk both stepping out of compliance and letting patients down.
Examining the state of health equity
When reviewing enrollment in Medicaid and Children’s Health Insurance Program (CHIP) plans as a federal and state benchmark, the takeaways might first feel muddled or contradictory. The fact is that Medicaid and CHIP enrollment spiked during Covid, with the subsequent “unwinding” process walking back access to these plans. As of January 2025, 78.4 million individuals were enrolled in Medicaid and CHIP plans — representing an increase from pre-pandemic levels (+10%) but an even greater decline since March 2023 (-17%). State by state, that decline was sometimes even more dramatic. Today, child enrollment in Medicaid/CHIP is below pre-pandemic enrollment in 13 states.
Given this, it may be surprising that national Medicaid and CHIP enrollment is still, collectively, higher than it was before the pandemic. One of the key factors behind this trend is the change in enrollment processes. Since the start of the pandemic, the Affordable Care Act’s (ACA) Medicaid expansion encouraged 40 states to expand enrollment eligibility. Many states also took the opportunity to review and update their renewal processes, which likely decreased the number of eligible people who were disenrolled.
Despite the overall increase in enrollment, a significant number of individuals have been disenrolled in recent years, falling through the cracks because of bureaucratic failures to confirm their eligibility in the first place. One illustrative example: many healthcare enterprises paused eligibility checks during the pandemic in an effort to make a difficult time for many individuals a little bit easier. In the fallout, those families and individuals were vulnerable to surprise disenrollments. Looking back at the situation that led to so many disenrollments, every step that was taken was likely made with good intentions. Unfortunately, that doesn’t change the distress and sometimes material harm that has come to families who were relying on coverage they lost.
To prevent further harm and ensure families aren’t left behind again, we must use data more proactively — not only to close gaps in coverage but also to support accountability in how care continuity is managed. One reason data collection is needed is to define accountability for patient healthcare continuity that is tied to federal funds. States are expected to show accountability for how they spend federal dollars tied to Medicaid and CHIP, and systems must be prepared with the right patient population data.
This is a unique moment to assess every tool in the box — and explore how technology can help health enterprises forge a path forward, allowing us to engage diverse patient populations through their preferred communication channel, digitally survey their SDOH needs, and create new ways to address the revealed cultural and socioeconomic needs.
Photo: Getty Images
Carrie Kozlowski, OT, MBA, is Co-founder and COO of Upfront by Health Catalyst, a fast-growing, impactful digital health company. Upfront partners with provider organizations to digitally engage with patients, transforming their experience and guiding them toward completing necessary care steps through personalized, curated content grounded in health communication science. Carrie has spent the last twenty-plus years combining real-world clinical experience with strategic thinking and business acumen, leading strategy, operations, and talent development for forward-thinking companies united by the common goals of elevating population health and patient engagement outcomes. Carrie’s clinical background includes experience providing direct care, training, and management services as a practicing occupational therapist in Houston and Chicago. She holds a master’s degree in business administration from the University of Illinois, Chicago, with a focus on entrepreneurship and strategic change management, and a bachelor’s degree in occupational therapy from the University of Hartford.
This post appears through the MedCity Influencers program. Anyone can publish their perspective on business and innovation in healthcare on MedCity News through MedCity Influencers. Click here to find out how.