Goal #5: Provide a national resource for public health needs

As health care delivery shifts toward digital health such as telehealth, remote monitoring, and AI-enabled services, no standardized measure has existed to assess whether communities are equipped to access and benefit from these technologies. The gap leaves resource allocation and intervention planning without an evidence base.&nbsp;The Digital Health Index (DHI) fills that gap. Published in JAMA Network Open and developed with support from the NCATS RC2 award to the UNC ViVE Center, the DHI is an AI-powered composite index validated across all 85,396 U.S. census tracts. Built from 21 indicators confirmed through a two-round Delphi panel of 37 national experts, it integrates digital connectivity, health care access, and socioeconomic conditions, domains that existing indices treat separately or omit.&nbsp;Between 56% and 67% of the most digitally vulnerable communities in the country do not appear in existing tools. Led by Dr. Saif Khairat, PI of ViVE Center at UNC, the research compared DHI results against the Social Vulnerability Index (SVI), Area Deprivation Index (ADI), and Digital Deprivation Index (DDI). Only 33-44% of census tracts flagged as highest-need overlapped. Communities with lower DHI scores also carried higher per-capita health care costs, grounding the index in economic outcomes, not demographic proxies alone.&nbsp;The DHI is built entirely from publicly available data, reproducible by any health system or federal agency, and updatable as infrastructure conditions change. It gives policymakers, health systems, and community leaders a census-tract-level instrument to direct digital health investment where existing tools have created a systematic blind spot.&nbsp;The DHI is operationalized through a publicly accessible web portal that provides community-level insights, generates reports, and offers AI conversational agents for efficient information retrieval.&nbsp;Digital Health Index (DHI): <a href="https://dhindex.com/" target="_blank" rel="noopener noreferrer">https://dhindex.com/</a>JAMA Network Open: <a href="https://doi.org/10.1001/jamanetworkopen.2026.19372" target="_blank" rel="noopener noreferrer">https://doi.org/10.1001/jamanetworkopen.2026.19372</a>

North Carolina Translational and Clinical Sciences Institute

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University of North Carolina at Chapel Hill

Supported by a National Center for Advancing Translational Sciences (NCATS) National Institutes of Health (NIH) RC2 award, researchers at the University of North Carolina (UNC) at Chapel Hill's Center for Virtual Care Value and Excellence (ViVE Center) developed the Digital Health Index (DHI), a first-of-its-kind AI-powered national tool that assesses community-level digital health suitability and vulnerability across all U.S. census tracts. Recently published in JAMA Network Open, the DHI provides researchers, health systems, and policymakers with a standardized approach to identifying communities that may face barriers to accessing and benefiting from digital health services, helping guide future investments in AI, telehealth, remote patient monitoring, and other digital health innovations.

UNC Researchers Develop an AI-Powered Digital Health Index to Identify Communities Overlooked by Existing Measures

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Goal #1: Advance clinical and translational science

<h3>Oral Fabhalta becomes the first treatment for adults with C3 glomerulopathy (C3G).</h3>Recently, the University of Iowa's Clinical Research Unit (CRU) underwent an FDA inspection as part of a clinical trial for the new medication, oral Fabhalta, aimed at treating C3 glomerulopathy (C3G).Due to the ultra-rare nature of C3G, the CRU saw patients from all over the United States and Canada and was the number one enroller for the clinical research trial globally.“Due to our recruitment, our site was selected for and completed FDA Inspection,” Carla Nester, M.D., M.S.A., FASN shared.<h4>Understanding C3 glomerulopathy</h4>C3G is an extremely rare kidney disease caused by the malfunction of a portion of the immune system, the complement system. This malfunction damages the kidneys and often leads to kidney failure, requiring a kidney transplant. People living with C3G face mobility issues, high levels of fatigue, and mental health issues. This disease can affect anyone and has an average diagnosis age of 16. C3G has no cure, and historically, there have been no effective treatments for C3G.<h4>Saying yes to a patient population in need</h4>Nester is a world-renowned physician specializing in rare complement-mediated kidney diseases and an expert in C3G. She serves as the Principal Investigator for the study alongside Nicole Gerot, the study coordinator.When the sponsor for the Fabalta study reached out to see if the University of Iowa would be interested in participating, “it was an instant yes! This population needs help,” Gerot explained.The study was to evaluate the efficacy and safety of taking twice-daily oral Fabhalta in adult patients with C3G. The study consisted of a 6-month randomized, double-blind treatment period comparing Fabhalta to placebo, in addition to supportive care. The medication was so successful that, after the first 6 months, an additional 6-month open-label treatment period was initiated, during which all patients continued to receive the medication.The oral Fabhalta targets the underlying cause of C3G by blocking the complement system, reducing protein in the urine, and reducing damage to the kidneys. Oral Fabhalta was the first treatment approved for patients with C3G.<h4>Meaningful results for patients with C3G</h4>The positive impacts of Fabhalta were seen as early as 14 days after taking the medication and sustained for 12 months. Before the approval of Fabalta, C3G patients had no other treatment options, relying only on supportive care, immunosuppression, and symptom management.“This is the closest thing to a cure we’ve ever seen for this disease,” Nester shared.<h4>A forward step</h4>Oral Fabhalta’s FDA approval serves as a historic benchmark for patients with C3G. The drug has the potential to become the new standard of care for those living with C3G and gives hope for a better future for C3G treatment options.“The FDA approval of oral Fabhalta for C3 glomerulopathy (C3G) is a pivotal moment for patients and for our Clinical Research Unit, because for the first time we have a targeted, oral therapy that addresses the underlying complement-mediated driver of this ultra-rare, often devastating kidney disease, rather than relying solely on supportive care and broad immunosuppression,” says Alejandro Comellas Freymond, M.D., the ICTS clinical research support director. “We are also extremely proud of our entire CRU team, whose dedication and expertise were essential to achieving this milestone. Just as other disease-modifying therapies have transformed outcomes in severe genetic and immune-mediated disorders, Fabhalta’s success in C3G opens the door to a new era of complement-directed treatments that may benefit a broader spectrum of glomerular and complement-driven diseases beyond C3G itself.”&nbsp;&nbsp;<a href="https://www.novartis.com/news/media-releases/novartis-receives-third-fda-approval-oral-fabhalta-iptacopan-first-and-only-treatment-approved-c3-glomerulopathy-c3g" target="_blank" rel="noopener noreferrer">https://www.novartis.com/news/media-releases/novartis-receives-third-fda-approval-oral-fabhalta-iptacopan-first-and-only-treatment-approved-c3-glomerulopathy-c3g</a>

University of Iowa Institute for Clinical and Translational Science

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University of Iowa

Recently, the University of Iowa's Clinical Research Unit (CRU) underwent an FDA inspection as part of a clinical trial for the new medication, oral Fabhalta, aimed at treating C3 glomerulopathy (C3G). Due to the ultra-rare nature of C3G, the CRU saw patients from all over the United States and Canada and was the number one enroller for the clinical research trial globally. “Due to our recruitment, our site was selected for and completed FDA Inspection,” Carla Nester, M.D., M.S.A., FASN shared.

Clinical Research Unit Study Facilitates FDA Approval for C3G Treatment

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Goal #3: Address health needs of populations

The fair, which aimed to increase awareness of vital services available to Schuylkill County residents who are retired or entering retirement, did not happen by chance. It was the direct outcome of a dedicated community-academic partnership sparked by a recent Community-Driven Research Day.<h2>The Catalyst: Community-Driven Research Day</h2>Community-Driven Research Days bring together community members, local organizations, and academic researchers to openly discuss pressing local health needs and brainstorm collaborative solutions. Rather than isolated engagements, CDRDs foster sustained collaboration, creating pathways for pilot funding, grant development, and long-term partnerships.During the Schuylkill County event, a clear priority emerged: the need to better support the region's aging population as they navigate the transition into retirement. Recognizing this critical gap, a group of passionate community stakeholders and researchers formed the Schuylkill Healthy Aging Task Force.<h2>Turning Ideas into Reality with CTSI Pilot Funding</h2>Identifying a need is only the first step; taking action requires resources and support. To ensure the momentum from the Community-Driven Research Day translated into tangible community benefits, Penn State CTSI made pilot funds available to support community-led programs designed by the newly established task forces.The Schuylkill Healthy Aging Task Force submitted a compelling proposal titled&nbsp;"Cheers to the Golden Years 2026."&nbsp;Recognizing the potential impact of their initiative, the CTSI leadership team proudly awarded the task force a $2,500 pilot grant to bring their vision to life.<h2>"Cheers to the Golden Years": Connecting Residents with Resources</h2>Fueled by the CTSI grant, the task force successfully organized and hosted the Healthy Aging Fair. The event served as a vibrant hub of information, connecting older adults and soon-to-be retirees with a wide array of local services tailored to their unique needs.Navigating the resources available for healthcare, social engagement, and daily living can be overwhelming for those entering their golden years. The fair broke down these barriers, providing a centralized, accessible, and welcoming environment for residents to learn, ask questions, and build a support network.Jess Petrie, CTSI Education Specialist, and&nbsp;<a href="https://ctsi.psu.edu/ctsi-highlight-healthy-aging-fair-partner-jennifer" target="_blank" rel="noopener noreferrer">Jennifer Youndt</a>, a Food, Families, and Communities Educator from Penn State Extension, co-led the event's planning and execution. Reflecting on the significance of the initiative, Petrie shared:<blockquote>"Being part of the planning process for 'Cheers to the Golden Years' was incredibly rewarding. It is one thing to discuss community needs during a research day, but to see those conversations evolve into a tangible event that directly connects our older residents with vital resources is truly the heart of what we do at CTSI. This task force took a shared vision and turned it into a meaningful support system for Schuylkill County."</blockquote>The success of the "Cheers to the Golden Years" fair represents the core mission of Penn State CTSI: translating scientific discovery and academic resources into real-world health improvements. By providing the platform for dialogue (Community-Driven Research Day) and the resources for action (pilot funding), CTSI empowers communities to lead the charge in improving their own health outcomes.We congratulate the entire Schuylkill Healthy Aging Task Force on a remarkable event. Their work stands as a shining example of how collaborative, community-driven initiatives can make a profound difference in the lives of Pennsylvanians.

Penn State Clinical and Translational Science Institute

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Pennsylvania State Hershey Medical Center

At the Penn State CTSI, we believe that the most effective health interventions begin by listening to the communities we serve. Recently, this philosophy was brought to life in Schuylkill County through a highly successful Healthy Aging Fair, an event that perfectly illustrates the power of community-engaged research and collaboration.

From Community Dialogue to Action: "Cheers to the Golden Years" Fair Supports Healthy Aging in Schuylkill County

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UNC Researchers Develop an AI-Powered Digital Health Index to Identify Communities Overlooked by Existing Measures

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