How a Rare Disease Inspired the Creation of a Patient-Centric Healthcare Solution

Posted by Mark Nalywajko

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Apr 14, 2016 11:00:00 AM

One-on-One with Amy Gleason: Part 1

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You’ve often heard the phrase: "Necessity is the mother of all invention." That couldn’t be more true for one of CareSync’s Co-Founder, Chief Operating Officer, and Registered Nurse, Amy Gleason. Here, Amy will share the personal story of her daughter’s rare condition that led to the invention of CareSync, a clinical care coordination company that is focused on patient-centric solutions for people with chronic illnesses. Later in the series, she will discuss the following components of chronic care management including: requirements, insights 15 months in, struggles, overcoming obstacles, trends, the true value of CCM, and where she believes the future of healthcare is heading.

Amy, please share a little bit of background on yourself, your career, and why your passion for care coordination has fueled you to become one of the nation's leading experts in the field of care coordination.

I started out my career as an emergency room nurse, but I quickly discovered this magical creation called an Electronic Medical Record. In 1996, as a nurse I was completely amazed by the fact I could hit a print button, that would complete a lab or pathology requisition form containing demographics, insurance information, what kinds of test a patient was having, and other needed information. I didn't have to sit and fill out all this information by hand which I had done over and over again. I immediately saw the benefit of electronic medical records, and had many hopes and dreams for how they would help doctors, nurses, and patients in the future.

I worked with several EMR’s over the years until 2005 when I joined Travis Bond at his company called Bond Technologies, where we built the first browser-based EMR. We were working there on shrinking the silos, making providers more efficient, and many early interoperability projects that we hoped would start filling those dreams that we had. That EMR was eventually sold to Eclipsys in 2008 and then to Allscripts in 2010.

In June of 2010, while I was still at Eclipsys, my life and my family’s lives changed dramatically. My daughter, Morgan, was diagnosed with a rare autoimmune disease called Juvenile Myositis.

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Prior to this my daughter was a gymnast and competitive cheerleader; and she flipped and twisted all over the place. We called her the energizer bunny, because she never stopped moving. Suddenly Morgan went from being this active child, to the opposite. All of the sudden, I would go to pick her up from cheer practice, and I would find her sleeping on a couch. She had told her coaches she was too tired to practice, which made no sense to me. She started having these weird rashes on her hands and her elbows. Eventually it got to where she couldn’t ride her bike down the street or even walk up the stairs in our house.

It took about fifteen months for us to figure out that these weren't just a bunch of random illnesses, a headache here, a stomach ache there, and a mix of all these different problems. After fifteen months, we finally found a doctor who properly diagnosed Morgan with a rare systemic autoimmune disease. She went from having one pediatrician, to having 12 different providers, across 6 different health systems, in 3 different states. Unfortunately, none those providers really talked to each other or shared information. As I went through trying to help her, I ended up creating a binder of all her records that I carried from place, to place, to place.

Every appointment started with, “So tell me what’s been going on?” I realized they were actually expecting me to be able to tell them all that information, and to keep them up to speed with what was going on with her. That was a little scary even to me as a nurse, because it was a lot of information to keep and tell along the way.

I knew that it was difficult for patients and families, but I honestly had no idea how hard it was to coordinate care among multiple providers and to simply keep track of what was happening. It was really difficult job: Remembering the details, getting the tests done that were ordered, simply showing up to all the appointments, and keeping all of your family involved and in the loop along the way. Even as a nurse with a health technology background, I struggled to keep Morgan’s information current. I tried different tools, I carried around a binder, and then started requesting records. I was continually shocked that I actually had more information than her doctors did, in my little paper binder.

What’s Morgan doing now?

Morgan is going to college at Auburn University in the fall. She actually works here, at Caresync, part time in data entry.

How did the experience with your daughter move you to start a new company?

After a lot of persuasion, I convinced Travis that we needed to make another go of it but this time to help work with patients and their families directly. In 2011, we started CareSync with the originalApple_hands_350x230_v3.jpg mission of helping patients access and understand their health information, and to make it easy to share them with their providers and families.

Our first real goal was to solve the records issue. We knew it was too much work to put on the patient. We started with a concierge model where patients and families purchased our service. We went direct to the consumer, then we did the work for them gathering and compiling their medical records.

Along the way, we realized there were other services that we should later layer on to that, so the same nursing staff that was helping to gather and organize the records could also help coordinate care, make appointments, set reminders, and other things that would come up with different patients, based on their needs. By wanting to help the patient navigate the system we naturally ended up in the care coordination space.

Then in the fall of 2014, when CMS released the requirements for Chronic Care Management (CCM), we were very excited because we were already providing services that were just like that. We had to make a few tweaks to our software and programs, to meet CCM requirements for billing and consent forms, but overall, we already had a working software program and the clinical services department ready to go.

I think this is one of the biggest differentiators about CareSync, that we were already performing chronic care management services for patients before the code. A lot of other people are chasing the code and trying to create something that meets minimum requirements, but because our service were created to be valuable to the patient first, we have something really valuable, above and beyond the requirements.

What fuels you?

When you have created something altruistically, there is a passion that seems to take on a life of it’s own. There’s something very personal that fuels the work ethic and the creation of that solution. It’s a passion for something more than just a mere business opportunity.

This passion has translated into gaining the attention of groups like Merck Global Health Initiatives leading the funding efforts to ensure that CareSync has the resources needed to build on what was already created. Everyone at CareSync has been able to combine an incredible amount of experience in healthcare, and an extensive history in healthcare technology, to create patient-centric solutions focused on value based care. My daughter was our first patient member, and because of that, CareSync will always put the patient first.

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