Managing the complicated process of managing illness

Posted by Amy Gleason

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Oct 9, 2013 5:00:00 AM

This is a story I recently had the opportunity to contribute to the Global Genes Project's blog.  I hope you enjoy it, and if you can commiserate, please leave us a comment.

Managing health is complicated. I've never met anybody who would 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 or chronic 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 sane, organized 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 education 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?

I turned to technology to try and help me.  I can't tell you how many dozens of programs and applications I tried to manage symptoms, 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 for 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 providers have 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 to lug around a binder.

no more binders

There are a ton of really great applications and services--but none were more than a point solution, and few were designed and developed with the rare disease community in mind.  Our complicated life requires not just a simple tool to give us a comprehensive snapshot at Morgan's health when we need it, but also a robust solution 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 illness.

  • The CareSync records retrieval team acts on your behalf to collect and transcribe your medical information into a single, cohesive record that you own and control. CareSync is designed to make your medical record useful to you; data is presented in an easy-to-understand way and is simply shared with family, friends, caregivers, and providers.
  • Access to your complete medical record helps you and your care team to understand your complete medical store. Information equals power.  Having your information, wherever you are, allows you to be more engaged in your care, share relevant, up-to-date summaries with your providers, and avoid duplicate tests and procedures.
  • CareSync Visist Managerâ„¢ for iPhone and Android allows you to ditch that 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, task lists to manage your visit goals and questions, and notes and journals to document care plans and voice record provider instructions.

With CareSync, getting access to your medical information is incredibly easy, and having it makes each and every visit significantly easier.  Are my problems and frustrations something you faced? How did you overcome it?  Please let us know in the comments.  Or, to learn more about CareSync, click here.

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