Amy Gleason, mother and COO of Caresync, explains her frustration with organizing critical medical information for her daughter. Her need for a better tool led her to aid in the creation of an innovative new technology to help patients get a more precise diagnosis and on their way to faster, better treatment.

As a mom, I know that managing health is complicated.  I’ve never met anybody who’d really argue that it’s simple or fun.  Just having to deal with providers, rushed appointments, insurance companies, and all the other moving parts is hard enough.

Add in just a handful of the complications that come with a rare disease diagnosis; multiple providers who don’t always chat with each other, medications that often get in each other’s way, overlapping health conditions that create confusing symptoms, the immense financial burden, and even the most organized, sane people start to feel overwhelmed and defeated.

Organizing, sharing, and effectively communicating the vast amount of information required to manage a rare disease can feel like a full time job.

How do I know?

Just over three years ago, my daughter was diagnosed with Juvenile Dermatomyositis.  You can read more about our experience here, but in a nutshell, I am an RN and have spent much of the last two decades designing and developing healthcare IT solutions.  Even with my educational and professional experience, I quickly found that playing the role of chief historian, medical records filing cabinet, inter-provider communications director, and full-time working mom is nearly impossible.

What did I do? 

caresyncI turned to technology to try and help.  I can’t tell you how many dozens of programs and applications I tried to manage symptoms, specialists, super specialists, medications, and the paper.  Oh the paper.  On the quest to gather Morgan’s past medical history, with the primary goal to put together the pieces of her health puzzle, I felt overwhelmed, under-equipped, and faced with copy charges in the hundreds of dollars from many of the nearly 2 dozen providers she had seen in her life.

Once I got my hands on her records and started to read them, I was horrified to see errors, things that weren’t communicated to me, inaccuracies, and other things that, ultimately, affected getting a quick diagnosis and timely treatment.

However, not one single technology solution really solved my problems.

  • Getting medical records is hard.
  • Getting medical records is expensive.
  • When I do get them, I find errors and inaccuracies that would have been nice to know…oh, well, nearly a decade ago.
  • It’s my job to have her medical information.
  • It’s also my job to make sure that her doctor has the most recent, relevant information.
  • Somehow it became my job to make sure this information was concise, and easy for them to consume.
  • Collaboration with family and friends is ridiculously hard.
  • I always have my iPhone with me.  I don’t WANT a binder.

There are a ton of really awesome applications and services–but none were more than a point solution, and few were built with the rare disease community in mind.  Our complicated life requires not just a simple tool to give us a comprehensive snapshot of Morgan’s health when we need it, but also a robust tool to securely store, share, and collaborate around her health information.

That’s a tall order.  I know.

In 2011, our team of healthcare IT experts came back together, formed a new company, and started building CareSync.  CareSync is a family health record that combines web and mobile applications with records retrieval services to help patients and their families manage the complicated process of managing health.

  • The CareSync records retrieval team acts on your behalf to collect and transcribe your medical records into a single, cohesive CareSync record that you own and control.  CareSync is designed to make your medical record meaningful to you; data is presented in an easy-to-understand way and is simply shared with family, caregivers, and providers.
  • Access to your complete medical record helps you and your care team to understand your complete health story.  Information equals power.  Having your information, wherever you are, allows you to be more engaged in your care, share relevant, up-to-date information with your providers, and avoid duplicate tests and procedures.
  • CareSync Visit Manager™ for iPhone and Android allows you to ditch the binder, and carry your complete medical record in the palm of your hand.  You get more from each and every provider appointment with access to information, tasks and notes to manage your visit goals and questions, and journals to voice record and document care plans and provider instructions.

So.  Are my problems and frustrations things that you face?  Have you read your charts?   Learn more about CareSync here.

3 thoughts on “Creating Caresync: A Mom on a Mission Bridges Gaps Between Rare Patients and Their Care Teams”

  1. It is amazing how much having medical records on hand and being able to read what providers write in their notes does to help me understand my health and what I can do to take care of myself. This is a beautiful story and a passionate team, this is why we strive to share CareSync with everyone we know!

  2. Your reasoning unnerves me 🙁

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