Better Living Through Data
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Season 2: Episode 12 - Aging with HIV - Real-World Data in Long-Term Care

This episode explores the growing population of older adults living with HIV in long-term care and why traditional testing and care assumptions no longer fit. It also highlights how multi-dimensional EHR data, including BIMS, SDOH, and long-term ART tracking, is helping researchers understand real-world outcomes and personalize care.

Learn more about Study Buddy and sign up for free access: https://pointclickcare-lifesciences.lpages.co/studybuddyea/


Chapter 1

Shining a Light on HIV in Aging Populations

Andie Morataya

Welcome to the Better Living Through Data podcast, everyone! I'm Andie Morataya, and I'm here with Anthony Pero for our final episode of Season 2! Anthony, June is here, and with it comes National HIV Testing Day on June twenty-seventh. But when most people think about HIV testing campaigns, they picture young, urban populations, right? Yet, there is this massive, silent demographic that is completely left out of the cultural conversation, and that is older adults aging with HIV in long-term care.

Anthony Pero

Andie, you are spot on. The face of HIV has changed dramatically over the last few decades, thanks to modern medicine. But here is the reality we are facing in the healthcare ecosystem: we now have an entire generation of people who are growing old with HIV, transitioning into long-term and post-acute care facilities. This is a cohort that historically was not even expected to survive to this age, let alone navigate the complex intersections of geriatric care and chronic viral management. And the diagnostic assumptions we have relied on for decades just do not hold up when you are dealing with an eighty-year-old in a skilled nursing facility.

Andie Morataya

It's an entire paradigm shift. From a marketing and strategic perspective, you realize we cannot just use the old playbooks. Researchers need actual, hard numbers to understand who these patients are. And that is where the scale of what we are looking at gets really staggering. Researchers have been digging into our dataset that includes over ninety thousand unique patient records with HIV. Ninety thousand! And of those, more than six thousand four hundred are currently active records.

Anthony Pero

Six thousand four hundred active records is an incredibly powerful window into real-time clinical care. In my world, when we look at real-world data, getting high-quality, longitudinal cohorts of this size is extremely rare. Especially when you are trying to parse out things like antiretroviral therapy, or ART, adherence in patients who are also managing four or five other geriatric comorbidities. You are not just tracking "did they take their pill today?" You are tracking how that ART drug interacts with their blood pressure meds, their diabetes regimen, and their cognitive state over years.

Andie Morataya

Exactly, it is the multidimensionality of it. It is not just a flat list of diagnoses. It is a live, unfolding story of their clinical journey, their daily medication orders, and how they transition through different care settings.

Chapter 2

The Power of Multi-Dimensional EHR Data in Care

Anthony Pero

And that multidimensionality is where we really start to see the human side of the data. For instance, think about cognitive decline. We used to rely heavily on Section G of the Minimum Data Set (MDS) to derive a Cognitive Performance Scale, or CPS, score. And we know the MDS is completed upon entry into the facilities and every 92 days (at minimum) or anytime there is a status change. But after the clinical transition in late 2023, Section G was phased out. So the dataset now points researchers toward the Brief Interview for Mental Status, or BIMS, which is the recommended gold standard for assessing cognition. When you can track a patient's BIMS score alongside their viral load, you are suddenly looking at the direct relationship between neurological health and HIV in real time.

Andie Morataya

BIMS scores paired with viral load, that is an incredibly specific and powerful tool. It means researchers can actually see if a cognitive dip correlates with a change in medication adherence or a viral spike. But it goes even beyond clinical markers, right? The dataset also captures what we call Social Determinants of Health, or SDOH, and DEI profiles. We are talking about tracking documented social isolation, health literacy, and disability status.

Anthony Pero

Social isolation in a long-term care facility is a massive clinical risk factor. If an older adult with HIV feels isolated, their compliance with ART can plummet, which then compromises their immune system. And because these patients are in these post-acute facilities for a long time, we have the unique ability to watch these trends play out. The average long-term stay in this demographic is over eight hundred days. Eight hundred days! That is more than two years of continuous, daily monitoring.

Andie Morataya

Over eight hundred days is wild when you compare it to traditional clinical trials that might last six months or maybe a year. And during those eight hundred days, the electronic health records are capturing, on average, more than fifty distinct data points per patient per day. That is fifty clinical, behavioral, and observational inputs every single day.

Anthony Pero

Think about the granularity of that. Fifty points a day means you are catching subtle shifts in immunological markers, like CD4 plus T-cell counts, or changes in cytokines like IL-two and IL-six, alongside basic observations like weight loss, nausea, and blood pressure. You are seeing the full biological and physical picture. This is why pharmaceutical companies, government agencies, and academic researchers are leveraging this resource. It bridges the massive gap between controlled, sterile clinical trials and the messy, complex reality of real-world patient care.

Andie Morataya

It is truly empowering researchers to build better interventions, tailor public health programs, and ultimately make sure that these older adults are not just surviving, but living with dignity. It is a beautiful blend of deep science and deep empathy.

Anthony Pero

It really is. We are moving toward a future where healthcare is truly personalized, even for the most vulnerable populations we serve.

Andie Morataya

So true, Anthony! One major milestone for PCC Life Sciences is the launch of our new AI-powered natural-language research tool "Study Buddy"! This new tool allows researchers to quickly answer their questions or theories in real time; providing quick insight and visibility into if a research question has legs.

Anthony Pero

Yes, Andie, that's right; and right now, we're offering free access to Study Buddy! Check the link in today's description to learn more and sign up for free access!

Andie Morataya

On that note, we have reached the end of today's episode AND the end of Season 2! Thank you so much for joining us!

Anthony Pero

Wow! The end of Season 2! Hard to believe we’re here! We will have new episodes in Season 3 of the Better Living Through Data podcast starting the first week of September! Take care, everyone! See you next Season!