In an age where everything's electronic and going online, the days of logging blood sugars by hand is clearly on the way out for many PWDs (people with diabetes).
Diabetes camps across the country are embracing Electronic Medical Records (EMRs) and Electronic Health Records (EHRs) like the rest of the healthcare and medical world -- yes, there actually is a difference between EMRs and EHRs. Both have been pretty well-publicized and debated in recent years, and the unfolding health care reform has this mixed in on a variety of fronts.
The Diabetes Education and Camping Association (DECA), a non-profit organization supporting more than 400 diabetes camps worldwide, is just one group looking at how this will all materialize.
Today, we're excited to welcome fellow type 1 PWD Jenna Holt, leader of the very D-Camp in Indiana where I'm proud to serve as a board member. The Diabetes Youth Foundation of Indiana) recently got a grant to put an EMR system in place, and we're paving the way on this for many other camps nationwide!
We were originally planning a rollout for this summer's camp in June, but the timing was too tight, so we're going to be playing with it and learning the system before the kids come back in 2014.
With that, I'll let Jenna talk about getting this EMR system up and running and what the experience has been like so far:
A Guest Post by Jenna Holt
My answer: they're the Greatest Thing Since... (Insert Favorite Product).
Let me explain in the context of diabetes camp:
From the time when I signed on as the DYFI's executive director, one of my goals to obtain an EMR system for our Camp Until a Cure.
Why? Think about it... Ever wonder what your handwriting looks like to an untrained eye? Now imagine your handwriting under pressure: little sleep, outside in the elements, in a small space, hurried by small children ready to play.
You get the picture. Writing can be tough in those situations, and reading what's written is even more of a challenge... oh, and did I mention we're talking a lot of blood sugar numbers and little notes about everything else on the diabetes management front during camp? Yes, it's quite a bit of scribble-scrabble.
Right now, this is what that world of writing looks like for our D-Camp with the EMR predecessor - the cardex.
A cardex is the stapled, paper booklet used to keep track of a camper's medical history in a nutshell along with recording any and all blood glucose levels and changes to insulin rates. It includes allergies, insulin rates, basic facts about the child, a place to record blood sugars, treatments, and changes.
For us, the process begins with a label printed from a program where information is entered by hand -- for all 200+ campers. These labels go on the cardex, and then that child's cardex is grouped with others from the same cabin which are then given to a pair of medical staff (generally comprised of students completing medical rotations). The cardexes travel with the group for an entire week (sometimes more if the child comes to camp for more than one week) and is filled out by the medical staff.
At the end of the week, a copy of the cardex is sent home with the parent, provided the child or parent doesn't set the file down and lose it in the 'move out shuffle.' If the parent has any questions about the cardex (assuming they can read it), they can call our medical director to get the scoop. The whole process will start over the next year: paper application, manual entry, handwritten notes, copy to the parent.
Pretty primitive, right?!
My thinking was that there had to be a better way!
Last September, I went to a D-Camp conference held by the Leona M. and Harry B. Helmsley Charitable Trust. Among other topics covered, two speakers presented on EMRs. After the conference, I contacted one of the presenters who implemented one of the EMRs at their camp, and from there I connected with the system's creators. Here it was, one of my goals finally within grasp!
The group that's implementing our system is the Nevada-based Sapphire Web Solutions, and our Indiana camp is only the second after the Nevada Diabetes Association Camp Vegas to get this system. I've been told that the association's been working with Sapphire on this for years, and that one of the company's business partners has diabetes and actually came to D-Camp as a child! The project was more of a "dream, fun job" to work on to help a friend, but it turned into so much more than that.
Through a generous corporate grant and the donation of four iPads needed, we finally started putting the EMR system in place at Camp Until a Cure this year.
Broken up into two parts, the program involves a registration system and an EMR system that "talk" to each other. It's a cloud-based system that allows the user to enter data online through a secure network and then update that data up until 24 hours before camp -- important because we all know that diabetes management is ever-changing! It operates off of pre-assigned permissions and once staff and medical assistants are assigned cabins, the system is updated to reflect who is able to access which campers. Our medical director will be able to access all campers whereas the medical staff for each cabin will only have access to that cabin's information.
The program will store all information about the camper and be easily accessible by clicking on the child's name. It also includes a picture (taken at check in). The medical staff will be able to easily enter data on the iPad which is then stored on the cloud. After camp, the parent will simply log in and have access to their child's records while at camp -- which also eliminates the massive amount of space needed to house each future year's records as it will all be safely stored online. The possibility for error is greatly reduced! When the next year comes around, the parent will simply log in and update the child's existing information.
I was able to play around with the system a bit during the last week of camp. Unfortunately, due to the timing of funding, program building, and camp, we weren't able to implement a full trial this summer. However, it was great getting to see glimpses of what this system will mean for our camp, the campers' healthcare, medical staff's ability to monitor, and parent's ease to enroll and track their child's health while at camp.
Moving forward, I will be testing the system by pretending to be a camper using the EMR to track my blood glucose, level of activity, carbs, etc. Our medical director will be logging in using another iPad with the system on it to monitor me as if I were a camper. From there, we will be able to fine-tune the program to cater to our campers' needs. I am looking forward to next camp when we will have a fully operating system in place that will allow us to better serve our families and campers. Who knows? Over time, we may be able to provide hard evidence of the power of camp and the positive effect it has on these kids.
We all have to have our goals, right?
Sounds great, Jenna! I'm obviously biased being involved, but we're all curious about how the campers will take to the iPad-logging and how that data will be shared once system's complete. Keep us up on the progress... We're also interested in hearing from others who've used these EMRs or EHRs, whether at D-Camp or elsewhere!