Pioneering Healthcare Change: Enhancing Rare Disease Management Using Non-Clinical Data

Hello. Brian Urban here, Innovation Director, and I lead emerging It's at Finthrive for our life science, care, ambulatory, and channel health care technology partners. Within the ecosystem here. Very good question. So, individuals that are facing a new diagnosis of a rare disease, and there are a lot of rare cancers that are continuing to be identified every year. They have a new responsibility and that is not only their disease management with medication, treatments they might have to seek in person on a regular basis or at home as they learn how to use certain medications, or, have telephonic or telemed checkups, but also the rest of their life, their family, children, significant others, maybe even parents they might have been taken care of as well. And, and they're also their job if they're employed. So there's a lot of different things facing them. And as far as technology is concerned, the last thing they need is another app. Or another website or another thing to toggle in their mind, for what they have to update to track their wellness. But what they do need in terms of patient engagement, we work with Walgreens. We're developing very nice partnership with them in terms of their health equity strategy and a patient and, patient engagement. And knowing that with my my background too, the kind of single point of contact for them from a clinical standpoint is highly valued. Whether it's a nurse or a care manager in some facet or it's sometimes if it's a licensed clinical social worker that is working with a care manager. A single voice is very helpful, providing that single voice with non clinical data to ask the right questions or prompts to the right questions to layer on additional services and needs is extremely important. So what we're seeing in our space of where I work with socioeconomic data exchange is supplying, front end care management teams with information that's happening outside of a physician's office. So we can see, in terms of our organization who's passed away in the home, liens, bankruptcies, criminal activity, judgments, home address and phone dispersion if they're moving a lot or if they're getting new addresses associated with their themselves and their household what the preferred language is within the household as well. So race, ethnicity gender language as well. So when you're looking at the whole person, that data set now kind of the view that you need, that's not clinical, supplying those types of datasets in a meaningful way, not a huge laundry list. To clinical workflow to a case manager, care manager, I like, is very helpful because then they can start to ask questions an appropriate way that says, hey, what else is happening in life? What else can I help you with? That type of workflow reconstruction with non clinical data is one of the most impactful things that I'm seeing within this particular space. So exacerbated chronic conditions, more rare cancer diagnosis that are coming with a slew of very expensive, complicated drugs to stay adherent to and to learn how your body reacts to. So it's a single voice that a lot of patients are more engaging with than just digital means. Hopefully, this helps you This is a a little bit of these insights because it's covering, the patient interaction with a care manager but also the wellness approach that goes into ingesting non clinical data that shows the whole person. That's a huge change. There's not regulations across industry that's saying to do this, to capture this, for health plans. That's there, but to actually consume it from other third party verifiable sources and to use it in a workflow. No regulations there, but that example that I work through is something that we're seeing start to play out. And and I think over the course of the next six months, nine months, twelve months, and beyond, we're really gonna see how that's adopted. And and the success that comes from those those early adopters of using these types of datasets. There's definitely no single answer. But it is definitely population specific as you're asking here in terms of individuals dealing with cancer and particularly rare cancer types. That's, that's really important to know what's happening to their life. Challenges that are, going to be a barrier for their adherence to medication. Their understanding of what they need to do for themselves and their family outside of the medicine that they're taking or treatments that they're needing to go to to receive. So that's, that's one of the biggest innovations and creative risks that we're starting to see. Not only retail pharmacies take, but a lot of other, specialty drug, research organizations as well, CROs, are starting to understand the importance of that as well.