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Mapping a New Path for Rare Blood Disorders

Using ²ÝÝ®ÊÓÆµ Compile’s analytics to transform how patients with rare blood disorders access specialized care across Indiana.

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2.5 minutes

Healthcare professionals in scrubs sitting together in a meeting or discussion.

When it comes to rare blood disorders, navigating the path to care is often anything but straightforward. Patients may face an array of challenges, including delayed diagnosis, limited access to specialists and access to medications they need for care.  

Innovative Hematology (IHI) is home to Indiana’s only federally designated hemophilia treatment center, the Indiana Hemophilia & Thrombosis Center (IHTC). IHTC has long been a lifeline for patients with conditions like hemophilia A and B, von Willebrand disease and sickle cell disease. But even with a team of more than 40 providers, they knew they weren’t reaching everyone who needed them. The question was: Where were the gaps? 

That’s where ²ÝÝ®ÊÓÆµ CompileTM came in.

“We believe that data should do more than describe the past, it should illuminate the path forward,” said Veena Attivilli, vice president of Customer Success and Real-World Data Analytics at ²ÝÝ®ÊÓÆµ Compile. “Our goal with IHI was to help them see the full picture of their potential patient landscape and support their mission of providing expert care to the greatest number of Indiana patients.” 

Using a combination of Patient ReadyData™ and Provider 360 ReadyData, we built a custom analysis that mapped out the rare blood disorder landscape across Indiana and beyond. With these insights, IHI could now see which providers were treating and referring patients with rare blood disorders, the organizations they were affiliated with and a breakdown of patient volumes for each. 

The data revealed potentially underserved regions, non-specialized providers who could benefit from targeted education and referral patterns that extended across state lines. Armed with this intelligence, IHI launched a series of strategic initiatives including strengthening provider networks, refining referral processes and expanding outreach to help ensure more patients can access the care they need.

This wasn’t just about numbers on a dashboard. It was about empowering IHI to close care gaps with real-world data.

The impact has been noticeable. IHI is now better equipped to identify treatment-ready patients, engage with providers who need support and ultimately deliver on the organization’s mission of providing the best comprehensive, coordinated care for rare blood disorders. 

For us, the partnership is a powerful example of how connected data and analytics can drive health equity and improve outcomes especially for those with the most complex needs. 

“Closing care gaps starts with seeing them clearly,” added Attivilli. “And that’s exactly what we help our partners do.”

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