It’s about time for another edition of our Small But Mighty series, profiling the many individual organizations out there powered by people passionate about helping PWDs. Today, we take a look at one such company addressing the complicated and stressful task of raising a child with diabetes…
Most kids are gone from the house a third of every weekday, so managing diabetes from afar can be next to impossible unless Mom and Dad drop by the school themselves. More and more parents are having difficulty communicating effectively with teachers and staff, as well as keeping in touch regularly with hospitals, which was the inspiration for John Henry and his wife, Pam. Their daughter, Sarah, was diagnosed with diabetes seven years ago and they began MyCareConnect as a way to keep everyone involved in Sarah’s diabetes management in the loop.
We chatted with Pam about about how this Web-based solution came about and what you can expect from it:
DBMine) To start off, what’s your personal D-story?
PH) Seven years ago — January 23, 2003 to be exact — was the day when doctors informed me that our daughter Sarah was diagnosed with type 1 diabetes. I remember the date well. I knew nothing about the disease. Our entire extended family (siblings, grandparents, aunts and uncles) quickly learned the importance of continually keeping tabs on Sarah’s glucose levels throughout the day. During the first year, we tested her blood sugar at least five times a day and gave her insulin shots three to four times per day. Then like most every newly diagnosed patient, we had to write down everything and fax the information to the doctor weekly. I don’t think anybody is adequately prepared for the vast amount of education and effort involved.
What exactly is MyCareConnect?
Basically, MyCareConnect.com is a website. It is a free online tool that enables real-time communication and blood-test logging among any set of caregivers you need, including parents, doctors and school personnel. We designed it to be easy enough for a 6-year-old to use because we knew Sarah would be using it.
How did this idea come about?
Sarah’s attending school compounded an already tough situation. One of the difficulties of having a child with diabetes at school is that you are handing the care of your child’s diabetes to others. As a full-time working mother, not knowing how her diabetes was being managed was stressful. Then there were the exchanges of calls with Sarah’s teacher and the school nurse, not to mention the inevitable “phone tag” and voicemail messages. I hated interrupting class, and they hated interrupting me at work—but there was no alternative.
With no existing web site or software available to help them, I hired a programmer to help me develop a user-friendly online tool that enabled real-time, private communication and blood-test logging among child, parents, and school personnel.
We recently topped 1,000 users and are approaching 1 Million Care Connections (which are the text and email notifications sent everyday over our network). We are just starting to attend events and hope to quadruple that number in the next year or so.
What has been the response from schools and hospitals?
Besides our parents, our most avid supporters are the school teachers and nurses. The best way we know how school teachers have embraced MyCareConnect is from a quote we got from one of them: “Our school finally has a tool that allows me to instantly see how all my diabetic students are doing throughout the day, often without them having to come down to my office. The fact that parents see what I see and the peace of mind that comes with that is invaluable!”
For teachers, this quote from one of Sarah’s teacher sums it up best: “I knew very little about and was intimidated by caring for a child with diabetes. With MyCareConnect, my diabetic student rarely has to leave the class to go to the nurse. I have learned a lot about diabetes as I now send questions to Mom and Dad instantly and get back prompt responses.”
It is important to know that we worked closely with the CDE’s from Children’s Medical Center of Dallas to ensure that we meet the hospital’s best practices, which are among the most stringent in the nation and we are now in our 3rd year of our contract with that center.
For Children’s Dallas it was, and is today, about improving patient outcomes. They have acknowledged that and have written about us in their magazine Child Times. The added benefits of an electronic medical record system is that they are more efficient in analyzing patient data, as well as communications with caregivers.
We even feel there is a “green” impact with the reduction in paper, the ability to access data from home versus the office, just to name a few. If you want to look at dollars or ROI (which I know many do), the financial savings we have calculated that have yet to be analyzed are over $100,000 or more annually, depending on the number of patients under care. We have demonstrated MyCareConnect to a limited number of doctors and clinics around the world and they all have acknowledge what an incredible tool this is, yet the perception is that it is a complicated endeavor to integrate a system like ours and we believe that is not true. If we can do it at a top Children’s Hospital, seamlessly and rather quickly, we can do it anywhere.
Are you working with any other hospitals?
We are currently engaged in a pilot program with the world-renowned Barbara Davis Center in Denver along with several of the school districts in Colorado. The pilot is a team-centered approach using MyCareConnect as an intervention studying multiple impacts across the team. We are very excited about the research that will come out of this.
How has MyCareConnect helped manage your daughter’s diabetes?
Sarah’s A1C’s have been in the low to mid 7’s since she began on a pump, a full percent lower than on shots. I think Sarah has learned the importance of managing her diabetes over time, not just using a system, but I think also of involving her network of family, friends and school personnel that are actively involved day in and day out. Her job is to test, take her insulin and communicate; MyCareConnect just makes the latter much easier for everyone.
One often overlooked factor is the psychological or emotional toll on anyone with a disease such as diabetes. When Sarah comes home from school every day, she is not bombarded with the common questions parents first ask “What were your numbers today?” or “Where is the note from the nurse?” As I like to put it, diabetes doesn’t always have to be the first topic of conversation.
It is quite simple. The website is MyCareConnect.com. From there, you can click on the NOW FREE or Sign-Up buttons and in a few simple steps you will have your own account up and ready to use. We also encourage people to call us if they have any questions or have ideas on ways to improve MyCareConnect. We get many great ideas from parents, so don’t hesitate to call us at: (302) 4OurKids / (302) 468-7543.
Also worth mentioning: this Spring we will launch our iPhone App called BLUELOOP. The application will also be FREE to any iPhone/iPod Touch user and will work seamlessly with MyCareConnect.com.
Additional Note: MyCareConnect is in the first stages of a study with The University of Michigan, focusing on parents’ perceptions of their child’s independence caring for their type 1 diabetes, the amount of support they receive from schools, community, etc., and related topics. Parents of school-age children with type 1 can help John and his team by filling out the survey here.