Empowering Patients and Accelerating Research: It’s Everyone’s Goal in the Rare Community

The Pulmonary Fibrosis Warriors (PF Warriors) and monARC Bionetworks teamed up today to host a Facebook Live video, sharing important information about how patients can become more involved in research and more in control of their own health.

Komathi Stem was the guest speaker, founder and CEO of monARC. With a unique background, she’s able to relate to those in the medical field, while showcasing immense empathy for the patients monARC serves. Komathi has 25 years’ experience as a biomedical engineer. She’s held senior leadership roles at Eli Lilly, Amgen, AstraZeneca, and Genentech/Roche. She also knows how it feels to have a loved one with a rare disease.

Komathi’s sister-in-law Tammy was diagnosed with a rare form of cancer. With no treatments on the market, the only option was finding a clinical trial. With Komathi’s background, she didn’t expect to have much trouble helping her sister-in-law locate one. While clinical trials are the most expensive part of the research process, there are plenty out there. But Komathi was stunned to find how many barriers exist for participating in a trial. Many of the trials they found Tammy turned out to be ineligible for and others were unfeasible due to distance. It took over a month to find a trial that could work for Tammy. A month could easily have been too long for a rare disease patient. And ultimately, Tammy still couldn’t participate in that trial. Unfortunately, she screen failed and unfortunately, that’s not uncommon.

Over 70% of patient’s screen fail.

That statistic alone explains why clinical trials are not only the most expensive part of the process, but the slowest.

But the statistic that gives Komathi hope is that 80% of patients are willing or semi-willing to participate in trials. With this knowledge, and her newly discovered passion, Komathi set about to solve the problem. She founded monARC Bionetworks, which you can read more about here.

Her organization helps patients have more control of their own medical future. While previously doctor’s walked around with hidden clipboards of information, they’re now required to disclose records to their patient’s. What monARC does, is then digitalizes this record for patients so that they can have instant access to it on their smartphone. It gives them the ability to pull up all of their health information and show their doctors in real time. Bill Vick, a PF Warrior, IPF patient, and user of monARC’s services says, “The power that it gives me as a patient is hard to describe”.

MonARC can also help assess whether or not someone is eligible for different trials and ultimately, help pair them with a trial faster than traditional methods. This not only makes things less stressful for patients, but more convenient for researchers as well. They even help match individuals to trials that feature remote participation and the use of telemedicine, which are often much easier for patients to manage.

Every clinical trial that is completed leads to broader knowledge for the medical community. Regardless of its focus, a study often can benefit a large variety of diseases. That’s another reason monARC wants to help fill trials faster- it doesn’t just help the singular condition being studied. It can help many in the rare community and those with conditions that may be more common.

monARC’s theory is so innovative because they see patients as the gateway to data as opposed to medical facilities. They’re passionate about providing individuals control of their own information. In monARC’s eyes, the patient is an active partner in the process and the key to developing new treatments.

Komathi’s goal is to empower patients and accelerate research through greater collaboration, and she’s achieving just that through monARC Bionetworks.

You can sign up for monARC very easily on their website, as professionals help guide you through the steps. Click here to get started!

The full Facebook video with PF Warrior is available here.


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