Jason Colquitt, the newest addition to the RARE-X board of directors, remembers the exhaustion he felt playing football in high school. Despite repeated hospitalizations for what was thought to be severe dehydration and rhabdomyolysis—a breakdown of muscle from intense exercise—it was years before anyone considered these episodes as something more serious.
It would take a ten-day hospitalization for a doctor to tell Colquitt that such episodes were not normal and that testing should be done to determine what was causing his episodes. Seventeen years ago, at the age of 32, Colquitt was diagnosed with the rare mitochondrial disorder carnitine palmitoyltransferase II deficiency.
Colquitt brings to the RARE-X board a combination of deep experience in healthcare data with an understanding of different stakeholders’ needs coupled with his own perspective as a patient.
“Jason is a patient advocate and a data expert. He’s been rooted in the world of health, health data, health economics and has built platforms and programs within the payer, CRO, and government sectors,” said Nicole Boice, founder and executive director of RARE-X. “He’s built the back-end to try to help transform some of the health tech that we know is important for rare diseases and beyond in healthcare. But he’s also brought forward his own data collection efforts because he recognizes what’s needed to support patients and remove barriers to access.”
Colquitt began his career writing software for the banking industry and soon moved into the healthcare sector to write code for early electronic health records. He eventually went to work for the contract research organization Quintiles which became the healthcare data and analysis firm IQVIA. During his time there, he ran data platforms for the Cystic Fibrosis Foundation, the Muscular Dystrophy Association, the American Heart Association, and many other global registries.
Today, Colquitt is CEO of Across Healthcare, which he founded in 2012 to envision, design, and deliver innovative technology solutions to organizations across the healthcare continuum. This includes supporting patient, provider, payor, and life sciences organizations. Additionally, his work comprises a wide range of organizational sizes and includes smaller rare disease patient groups.
“I started realizing that my worlds were colliding,” he said as he found himself working with rare disease organizations. “I had this passion and burden to help in the rare disease space. When I left IQVIA, I knew my passion was in the rare disease space.”
Colquitt joined the RARE-X board because he saw it as an opportunity to work towards his goal of helping rare patients and caregivers. He said if RARE-X can successfully execute on its vision—allowing patients to be able to collect data and allow that data to be useful for research—that would be “a huge success for the rare community!”
Colquitt says there are many data challenges for the rare disease community, including the need to ensure data quality, questions about who is collecting the data, and steps that need to be taken to standardize data. He said few patient groups or researchers understand the true end-to-end complexity of the data continuum.
“I see RARE-X filling in a lot of the gaps and to have one solution that can help bring a lot of the pieces together,” said Colquitt. “RARE-X can take on a lot of the complexities and just give the stakeholders on the ends of the spectrum exactly what they need.”