For the March 17, 2015 #DCDE Twitter chat we talked about the current design of today's healthcare systems and communications between patients and doctors. We also discussed how diabetes patients can become better experts on their disease and the technology available to manage it, and how they can converse with their doctors about diabetes in an informed manner.
We were honored to have Jewels Doskicz, RN, (@She_Sugar) returning as our host and welcomed special guest Joyce Lee, MD, MPH, (@joycelee). Dr. Lee is a pediatrician and diabetes specialist and an associate professor of pediatrics at the University of Michigan.
We started off by talking about diabetes education, asking:
Some talked about how it is difficult to continuously learn about diabetes after diagnosis, and that many are left in the shadows without the proper education:
Dr. Lee and Jewels mentioned the distance between ideal diabetes management and practical applications:
Others said that diabetes education and support is often found online.
We then moved on to technology and diabetes management, asking:
Jewels said it allows for more time spent on life, especially for her young, type 1 diabetic daughter:
Technology can also help us adhere better to our diabetes regimen:
Many lamented the lack of availability of diabetes technologies:
To these concerns, Dr. Lee said that vital technology should be more accessible and should be given right at diagnosis:
We segued into discussing possible technologies that would make diabetes easier to manage by asking
The artificial pancreas was mentioned:
Others want more diabetes supplies and more accurate technologies like CGMs:
Dr. Lee responded to the comments about CGMs by talking about the Nightscout project, which is an open-source project "that allows real-time access to a Dexcom G4 CGM browser via smartphones, computers, tablets, and the Pebble smartwatch. The goal of the project is to allow remote monitoring of the T1D's glucose level using existing monitoring devices," according to the Nightscout website.
Next we asked our participants to
Jewels reminds us that our workarounds are always changing:
Many said they are creative with their temporary basal rates:
Throughout the chat, people talked about the Diabetes Unconference, an event held from March 13 to 15, 2015 that offered peer-to-peer support for adults with type 1 and type 2 diabetes. At this event, some diabetics said that Certified Diabetes Educators (CDEs) don't create very individualized diabetes plans. To this, Dr. Lee responded
Others said that CDEs can be very helpful, but these helpful ones are often hard to find:
We followed up by asking,
Some talked about how better continuous communication of data could make for more valuable appointments:
Dr. Lee discussed the roadblocks that prevent better communication from the doctor with the patient:
She also explained that though she would like to be able to email her patients directly, many hospital lawyers forbid doctors from emailing as the servers may not be HIPAA secure.
Then we talked about sharing workarounds with your doctor, and asked,
Some responded with humor:
Others said how gracious and open their doctors are:
Some responded by wishing they were more confident in their diabetes management:
Others said that technology needs to create less room for error in calculations:
We ended with thank-you's and goodbyes: