At an eHealth Initiative Patient-Centered Town Hall on Chronic Disease Management last week, I was inspired by the story of one patient, Julie Cabinaw, user experience director at Hewlett-Packard Enterprise Services, who conquered obesity and Type 2 diabetes. Not only was it impressive how Cabinaw lost 80 pounds and got her A1C levels back to normal, it was remarkable to hear about the IT interoperability challenges she overcame to do all this.
I think it says a lot about the fragmented health system we live with today. Like Cabinaw said, we have the tools, we just need to sync them all together to achieve results. Cabinaw suggests the cloud could be the answer to have her health information available “anywhere, any time, any channel.”
Cabinaw, a mother of four, came from a long family history of Type 2 diabetes and obesity. “Both of my parents have diabetes, and seven out of eight siblings deal with it,” she said. Cabinaw developed diabetes during her second pregnancy, and in her third pregnancy her insulin demands shot so high she decided she needed to find an alternative because diet and exercise were not working. After thorough online health research, she found that a subset of the population used an insulin pump to manage their Type 2 diabetes.
Cabinaw worked with her certified diabetes educator (CDE) to jump through the first technology hoop to get approved for a pump. “I’d managed it [diabetes] really well, and in fact in my third pregnancy I earned an award from the local diabetes center about being a strong patient in managing my care.”
Cabinaw was advised by her physician to not to have any more children, but she decided to not heed that advice and entered her fourth pregnancy as a diabetic with daily insulin needs reaching as high as 300 units a day, or a bottle of insulin every three days. After her pregnancy, she began experiencing other obesity-related conditions, like climbing high blood pressure and cholesterol. Not only was Cabinaw a part of online groups to help educate her on alternative options, she read research articles that showed how weight loss surgery had helped certain patients’ manage their diabetes. In late 2011, Cabinaw decided to have weight loss surgery. Now, four months out, her A1C has dropped to normal levels without medication.
Technology Hoops: The Sneaker Net
Throughout her pregnancies, Cabinaw was an active manager of her diabetes, pulling together all the different silos of diabetes apps and information to make sure she was getting the right care. She would take her blood sugar using a meter that would wirelessly send the results to her insulin pump. She used food apps to verify carb levels, and then would adjust the dosage of her pump based on what she was about to eat.
Many times her insulin pump would lock her out before she could finish her dose because it was designed for a Type 1 diabetic with lower doses, and she had to wait for the pump to unlock to get the rest of the bolus. To meet with her CDE, she had to hunt around for either her Carelink USB device, or if she couldn’t find it, then use a USB cord to transmit data from her pump to her computer. She’d generate a report of her blood sugar levels, and highlight questions she had, print it and take it to her CDE. There were also a number of back- and-forth trips to the pharmacy and many calls to the insurance company to get approval for the high dosage of insulin.
“You can kinda see a trend happening here, lots of back and forth. I’m printing out reports, I’m taking them into people,” she said. “I’m going into new places. It’s a Sneaker Net; there are a lot of things going on here. All the tools were there. But now you have to ask yourself, how many people would go to these lengths to keep this together.”
Cabinaw said that her ideal world would exist in the cloud, whereby she could give permission for her pump to wirelessly transmit blood sugars to the cloud and allow her CDE and physician to receive alerts when blood sugar levels fell outside of acceptable ranges. The CDE would proactively coordinate with the doctor on care plans and then call her to arrange the pickup of any necessary medications.
Cabinaw stresses the need for more biometric device standardization and easier data transfer from devices to create actionable and shareable data. This data will spur better communication with the care team, she said, which will more easily allow the patient to be involved in their own care.
“To enable that shift from early adoption to mainstream consumption and really be able to use health technologies in a more effortless way, I think there are many things this industry can continue to work on to help people make better health decisions,” Cabinaw said.