We love hearing about how the #WeAreNotWaiting movement is exploding, bringing in ever more families and adults living with diabetes creating their own tools for sharing data that make life with this disease a bit easier to manage.
Today, we're excited to share the story of how a pediatric endo -- in Romania, of all places -- has embraced CGM in the Cloud via Nightscout and worked with a local group of D-families to create a "doctor's dashboard" multi-view system to let providers see diabetes data remotely! That doctor is Mihaela Victoria Vlaiculescu, who presented some early data on this system during the big EASD meeting in Munich earlier this Fall.
Dr. Vlaiculescu worked with Romanian D-Dad Bogdan Gorescu, whose 6-year-old son Vlad Andrei was diagnosed at age 3. He tells us: “This wasn’t anything official, or planned in the beginning, at least not on my side. I noticed that my doctor uses her iPad to watch for multiple Nightscout sites by opening each one of those sites into separate tabs. This was not OK, in my opinion, since she couldn't have a general perspective for her little patients. And this is how the idea was born.”
Of course wanted to know more, so we asked Dr. Vlaiculescu to share the details. Here’s what she says:
A Guest Post by Dr. Mihaela Victoria Vlaiculescu in Romania
I have been practicing in the diabetes field since 2000 and I started my professional activity in a public hospital. When I entered my internship in diabetes and metabolic diseases, I was fascinated by the children with type 1 diabetes -- by their power of adaptation, their strength of willingness and their common sense. Then I met a senior diabetologist who said to me that taking care of children with diabetes is difficult, it takes a lot of responsibility and is heartbreaking. And this made me stubborn to treat insulin-dependent children.
But soon, I learned despite the difficulties it was worth the effort. As type 1 is a lifelong disease for your patients, it becomes a part of your life. You build relationships with your patients and their families, and slowly you become a part of their family. You know when they first go to school, when they have a fever, and when they are given graduation exams. I believe this is the most rewarding part of being a pediatric diabetologist, and it's what has motivated me through the years. There are a lot of deficiencies and shortcomings in the healthcare system so I decided to start a private practice, trying to do the best for my patients.
In our country we are the only “organized” clinic that promotes the benefits of continuous glucose monitoring systems and other technology in diabetes and has a dedicated telemedicine unit, but there are a lot of families all over the country that have these devices, using Nightscout, without sharing data with their doctor.
Three years ago we started to use CGMs (Dexcom G4) in type 1 patients, mainly children, because I knew that the efforts to avoid hypo and hyperglycemia and to give some freedom to these children and their families will not be possible and safe without these devices.
There are few doctors who educate patients about CGM and encourage families to purchase these systems but the good news is that their number is growing slowly.
In our telemedicine center we follow children from our clinic but also children from other cities and regions of the country that have CGM devices and asked for our help in order to interpret the data and translate all this amount of information into therapeutic actions.
We now have almost 90 patients using the Nightscout application. The only reason why there are families and children in our clinic that do not use the system is the cost, as CGM is not reimbursed in our country.
I consider the new dashboard very useful and time-efficient; we have a separate dashboard for adults with type 1 diabetes, too.
Usually, I start my day by looking over all the children, identifying problems. In the middle of the day at noon, I see if there are additional problems or if the patterns are repetitive, and if so I contact the parents to ask for details and make treatment changes. The dashboard has the option to enlarge the page you want to see in detail so if you need details or a bigger image you can navigate from the dashboard to a specific child's page with just a click.
We have servers for hosting all this data, and we also have an application that allows me and my medical team to permanently keep an eye on the children's glycemic values. Yes, we have all the patients on CGMs (it is like we are following vital signs in an ICU but our patients are safe, at home or at school).
In the beginning we followed every child, daily. Nowadays, due to their increasing number and their growing “expertise” in diabetes management, we follow mostly newly diagnosed patients but also regular patients when they need our support during sick days, when we change insulin regimen, when we initialize insulin pump therapy (because we do not hospitalize patients in order to start insulin pump therapy) or during pregnancy.
We check daily, in the morning, all the sites and then we focus on some of them, who need more support. We try to solve emergencies before they escalate into a hospitalization, we follow them to observe patterns, we coach them to adjust insulin or carbohydrates in real-time situations. It is more like an interactive relation with our patients than a surveillance only.
I strongly believe that responding to day-to-day and within-day glucose variability is the key to success and real-time supervision by a healthcare professional can give self-confidence and safety to our patients.
Using telemedicine is like Big Brother but with a “therapeutic” effect. Most of our activities, as clinicians, are based on retrospective data analysis. But our patients, mostly the children, need real-time support and ongoing coaching. Using the existing Care Portal facilities in the Nightscout app, healthcare professionals have real-time access to all the data about factors that can influence glycemia, even more detailed than in a standard diary.
As a doctor I am proud of their HbA1c, less time spent in hyperglycemia, and mostly less time spent in hypos; less fear of lows and better quality of life (and sleep, too) appreciated by means of standardized questionnaires; good integration in care facilities, participation in extracurricular activities, parents who restart work sooner after diagnosis, and less of the "helicopter parent" effect.
The community of parents hooked up to this system in our clinic has created a group called Nightscout Romania for sharing all this information with other families with insulin-dependent children.
I am also trying to share our practice experience with other doctors and diabetes clinics in order to disseminate benefits of technology and digital health in diabetes care. In October, I presented our telemedicine system using Nightscout app during our National Diabetes Congress and I can tell you that my presentation / the information was well received and we are making progress in that direction.
But I need to admit that using this telemedicine application was truly a challenge in the beginning.
First, using advanced diabetes technologies for type 1 diabetes management places substantial burdens upon children and young adults and we need to support our patients, to teach them and to coach them during all the process. There were also issues related to resources required to support the telemedicine application (office staff, computers, Internet access), the demands on physicians’ time, the amount of data that needs to be managed and also the inexperience and lack of training of physicians and other healthcare professionals regarding interpretation of CGM results.
But we overcame all these obstacles and I can tell you that the effort was well worth it!
Thanks for sharing your story, Dr. V. Hopefully it will help inspire more medical professionals to follow suit in their own practices -- all over the globe!