Rare Community Profiles: How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disease Space

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Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

How Matrix Can Be Leveraged to Co-Create and Co-Deliver Care in the Rare Disase Space

With 24 years of experience in healthcare technology, Jason Colquitt has been a driving force in EMRs and clinical research. His experiences, coupled with his role as Chief Executive Officer at Across Healthcare, reflect his dedication to improving the medical landscape through disruptive and innovative technological solutions. Similarly, Jason aims to create a better world for those affected by rare conditions.

As the CEO of Across Healthcare, Jason’s professional prowess is only part of his extraordinary story. Behind the scenes, he grapples with carnitine palmitoyltransferase deficiency, a rare disease that has woven its complexities into the fabric of his life.

In an interview with Patient Worthy, Jason opened the door to the challenges of living with a rare condition and his desire to meaningfully impact rare communities. This offers readers a glimpse into the human side of healthcare leadership. Jason has not just learned about his diagnosis but transformed it into a catalyst for change.

At the heart of Jason’s current mission is Matrix, a groundbreaking platform that transcends traditional healthcare boundaries. Matrix serves as a shared space to seamlessly connect patients, caregivers, researchers, and healthcare providers to foster collaboration and data-sharing, co-creating and co-delivering care. Through Matrix, Jason envisions a future where data acts as a powerful driving force for research and cures. In our conversation, he sheds light on the untapped potential of collective knowledge and its profound impact on the future of healthcare.

Jason’s Rare Disease Journey: Carnitine Palmitoyltransferase Deficiency

Visiting the hospital’s emergency room is unfortunately an experience that many people have throughout their lives. But when these visits become frequent, it can become a problem—and a signifier that there is something deeper going on.

Throughout his life, Jason found himself hospitalized often with symptoms like muscle pain and tightness, fatigue, and hematuria. Doctors would tell him that he was dehydrated and to drink more water. Rinse, repeat. Eventually, after ten days receiving fluids in the hospital, a physician finally told him that his health journey was not normal.

After various tests, Jason was diagnosed with carnitine palmitoyltransferase deficiency, a rare condition in which CPT1 or CPT2 enzymes don’t work properly. Normally, these enzymes get fatty acids into cells to be used for energy. When these enzymes aren’t working properly, the cells that rely on these fatty acids—like muscle cells—also don’t work properly.

Since his diagnosis, Jason has learned to manage his condition. He shares:

“I was a fairly active person and still try to be, but I have to be careful now. When I overexert myself, my muscles break down. My symptoms manifest like dehydration: I get muscle pain and tightness, I can’t walk or move. Essentially, as my wife describes it, I ‘lock up.’ I don’t take any medicine for it but learning to manage—watching my activity level, constantly drinking fluids—means I haven’t been hospitalized since.”

A Personal Mission

Over his 24 years in healthcare technology, Jason worked with many clinicians and researchers to gather information about rare diseases. From these interactions and from his own rare disease background, he came to recognize that spurring rare disease research can be difficult. Many organizations work tirelessly to push for studies, treatments, and cures. But financial issues and lack of technology represent extreme barriers to success. Says Jason:

“I consider myself fortunate to be close to the executives of these different healthcare tech companies, and it gave me such a unique opportunity to work with groups like the Muscular Dystrophy Association and the Cystic Fibrosis Foundation that have been doing amazing research for their communities. But it broke my heart to think that research and data collection tools were not available to a large majority of rare disease communities.”

Jason founded Across Healthcare in 2012. From 2014 to 2019, he worked as the Vice President, Real-World & Late Phase Technology Solutions for Quintiles/IQVIA, where he managed a global technology team to meet the needs of his division. Yet this nagging feeling never left him: he wanted to create change and develop a better platform for rare disease communities. In 2019, he returned to Across Healthcare as the CEO, wrote 10 pages on his vision for his Matrix platform, and hit the ground running.

Matrix was launched the same year.

About Matrix

Matrix is a shared platform to help care for and cure rare diseases through data collection, community development, and research advancement. When the platform talks about the co-creation and co-production of care, Jason explains that it means:

“Having patients, families, caregivers, clinicians, and researchers coming together to produce care. Letting patients enter data so clinicians can see feedback loops. Researchers can source that and give insight back. Groups can see feedback from their own groups but not across different ones. This replaces the historic research system where inputted data ‘goes away’ and must be input months later without ever seeing the results or going on. We want this to be a collaborative and involved platform.”

So how exactly does Matrix work—and what is the process for inputting and collecting data? Jason explains:

“Our groups use the platform to collect and share their own data. It’s a way to get all of the data in one place so it can be shared with your clinicians. You can connect to your EHRs, collect and track data over time, and share it with people—although you need a pin code to share that. This is also an FDA and EMA-validated tool. Any data on Matrix can be used for research and submission to regulatory agencies. On a patient level, Matrix collects individual insights. You can correlate data points of yourself or answer surveys and see that trending in the tool: how does your data compare to the entire community? Administrators and study managers can aggregate community data and visualizations.

Matrix stands as a unique tool that provides important help to rare disease communities. Many groups are not quantitatively or qualitatively collecting this data. But it is hugely important to track this data because it’s needed to create therapy. Groups need to start with a natural history study. If your condition is in the system, we’ll have historical data which can hopefully be used as a control arm in clinical studies. The researchers need a control group, so our goal is to create a robust enough data set so that people can be put directly onto the study drug. After treatment, researchers want long-term follow-up. For example, gene therapy post-market surveillance registries track outcomes and safety; this is where our platform can really help that. Our goal is to be the best tech to enable and empower rare disease communities.”

If you would like to learn more about Matrix and how it operates, you can watch a demo on the website or reach out to Jason ([email protected]). Jason would be happy to perform a demo or discuss how Matrix differs from registry platforms by offering different patient tools, connecting you with an Institutional Review Board (IRB), or showing you which data to collect. Matrix is operated on a sliding scale to account for the needs and situations of nonprofit organizations. Says Jason:

“I know change management is hard for groups. But we have tried to remove all obstacles so that groups can focus on what is most important: collecting data.”

Matrix Utilization

The Mowat-Wilson Syndrome Foundation and Phelan-McDermid Syndrome Foundation were the first two organizations to join Matrix. Since that point, Matrix has expanded to encompass 85 different advocacy groups across 180 rare conditions and 121 countries. Says Jason:

“180 rare conditions are amazing. But there are almost 11,000 rare diseases. There’s a lot of space where people are dying, not getting therapies, and not having data collected. Through Matrix, I hope to expand and accelerate what we’ve done to reach more groups globally and begin working towards change. I want to help everybody.”

In 2023 and moving into 2024, Matrix invested in devices and sensors to broaden the ability to capture data and curate narrative reports. For example, a continuous glucose monitor allows data to be collected in real-time. Matrix continues to evaluate new ways to aggregate more data into each cohort and allow organizations access to data to expand their research capabilities.

In the end, Jason says, he’s called to make a difference in this field and he will continue working towards that goal. He says:

“These rare disease groups have so many priorities. In the rare space, we often focus on the physical aspect of healing someone. But there is also a mental and spiritual burden that patients and caregivers carry. By contributing to data collection and advancing research, I hope that I’m reducing some of that burden. If I can help in any small way, that’s my heart. This is my calling. If I can ever help, I’m here to talk to or bounce ideas off of.”

LunaDNA, a genome data sharing platform, recently announced that it will close as of January 31, 2024. If any rare disease organizations were collecting data on LunaDNA and are now in need of a platform, Jason would be happy to connect and help. You may email [email protected] for more information.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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