By Mary Anne Patton
In March 2020, healthcare providers around the world scrambled to get up to speed with the tech and new workflows they’d need to make telemedicine a success.
Diabetes companies, non-profits and health professional associations leapt into the void, and a cornucopia of webinars appeared, almost overnight.
There were case study walkthroughs, tips and tricks for telemedicine success, a chance to compare notes on COVID-19, and new, innovative learning channels for people with diabetes.
I was captivated by the rare opportunity the webinars provided to hear clinicians reflecting on their own practice.
Many spoke candidly about things that have been broken in diabetes care for a long time and new insights telemedicine was giving them into the patient experience.
Every clinician spoke about multiple challenges involved in device uploads and how the success of the clinical encounter rested on getting the diabetes data. They discovered that teaching patients how to upload the devices themselves was leading to transformational outcomes. People with diabetes had begun showing up to telehealth appointments with their own insights into their diabetes patterns and their own suggestions on what to adjust.
“It’s more collaborative, less interrogative,” said one endocrinologist. “People with diabetes have more control.” “They seem more relaxed.”
One clinician seemed surprised that two of the groups who were grateful for telemedicine were people who’d had ‘high HbA1cs’ (“they appreciate help with tuning settings”) and people from low socio-economic backgrounds.
“Everyone’s got a smartphone” said one endocrinologist who acknowledged that her patients from under-resourced areas had to catch multiple buses or trains to get to in person appointments. “They are so excited when they can see the patterns for themselves.” “Older patients are engaging with it.”
These findings led me to wonder:
- What underlying assumptions might clinicians have had about these ‘groups’?
- What was different about, or missing from, the clinical encounter prior to telemedicine?
- How might these improved aspects of care be continued, or even enhanced, post-COVID?
At a very concrete level, just having access to data and being able to visualise it is key. Being able to view glucose, insulin and associated data on the ‘same screen’ at the same time means teaching moments in both directions are possible. Seeing is believing.
One clinician spoke about how awkward it can be to work with diabetes data in face to face appointments:
It’s hard to explain things when you’ve handed the printout to the patient and you’re looking at the chart upside down.
I can recall numerous times over the years when my endocrinologist tried to show me something on his screen, such as the fact that my correction factor looked to be too strong, and I peered politely over at his screen, unable to actually see clearly enough to absorb the truth of what he was trying to show me. The alert message in my insulin pump bolus wizard told me my correction factor (sensitivity) was valid but “outside the regular range” which led me to distrust the information.
Once I could see the data for myself using Nightscout the penny dropped that indeed my correction or insulin sensitivity factor was too strong and needed changing.
The ability to do follow up appointments sooner, due to expanded telehealth billing codes in some health systems, seemed to be making a difference, as was the increased convenience for the person with diabetes who no longer had to take ‘half a day off work’ in order to physically attend a clinic.
Clinicians appreciated having access to multi-device platforms such as Glooko and Tidepool for data analysis.
Many expressed a strong desire for real-time or perpetual data, and the ability to do between-visit reviews, using a platform that combined all aspects of diabetes technology, including insulin pump settings, into a single view. Even though it was already being used by tens of thousands of people with diabetes, and clinical trials were in place to utilise it in major diabetes centres and research projects, no one mentioned the platform the We Are Not Waiting community had built for themselves in 2014 that already allowed this, Nightscout.
We taught people with diabetes how to be helpless.
This was said in a light-hearted moment by a diabetes educator, and I’ve taken it out of context, but these words jumped out at me.
In this instance, he was talking about the practice of taking insulin pumps and BG meters from people when they arrived for their clinic visits and downloading the devices for them. “I even realised we had been downloading devices for people who’d already done the download themselves,” he said.
This is a common practice in many large, multidisciplinary diabetes centres, no doubt driven by the need for an expedient solution to the excruciating difficulty most of us experienced with proprietary software downloads just a handful of years ago, rather than a desire by the healthcare provider to rob a patient of their agency.
But really, the data was being downloaded for the doctor.
Disclaimer: I have a brilliant and supportive endocrinologist that I adore & have access to helpful, caring staff at my clinic. This is a fictional amalgam based on previous encounters.
Diabetes Educator asks you to hand over your insulin pump. You detach it (an often awkward manoeuvre in a semi-public place). While the device downloads, and the diabetes educator is turned away from you, engaging with the computer screen, you are asked to step onto the scales. Your weight is noted. Next. Finger stick. Done. Noted. Next.
A smiling person in a uniform conducts the process with breezy detachment and competent efficiency. You’re the 35th client of the day.
Your insulin pump is handed back to you. You fumble to reattach the life-giving device to your body, vowing to remember to have it somewhere more easily accessible on your next visit.
The diabetes educator has turned away again and is now forwarding the reports to an endocrinologist, perhaps emailing them or attaching them to a digital chart, or maybe they are printed off and clipped to your paper chart which is placed into a into a plastic slot on the back of the door to the doctor’s office. No one thinks to give you a copy to look over before your appointment.
You’ve been processed and are free to return to the waiting room and sit. To wait. Maybe there’s a TV in the corner suspended from the ceiling with either commercial TV or some kind of syndicated health channel. You can’t block it without risking not hearing your name being called.
Everyone in the waiting room is silent, doing their own thing. Some of them will be anxious. Some will be looking forward to their appointments. Some are just desperate to get back to work, or at least to their car before they get a parking ticket, or maybe their bus is due or their primary school child is already waiting, the last one to be picked up, at the top of the deserted pickup queue. You try to reach your partner frantically to make alternative arrangements just as you are called in.
Some in the waiting room are desperately wanting help with their diabetes but unable to articulate this. Some already have it sorted. Others have given up. They want the consult to be over and done with as quickly as possible, but it’s a necessary step to getting what they need to stay alive, insulin. All have lives full of more compelling priorities than diabetes, but the moment of the clinical encounter is still ripe with possibility if it’s done right.
After an often difficult-to-ascertain-in-advance period of time, you are called to the doctor’s office. You sit either at right angles to the doctor or across an often large expanse of desk.
The endocrinologist has all the cards.
They do their best to remain neutral. They try not to rush but they are aware of how far behind in their list they already are. They’ve been at the hospital since 7am on rounds. They’ve had to help a patient make a life-altering decision today already which was ethically fraught, and they are wondering about another patient they are concerned about who did not contact them back. You’re their 23rd patient for the day. They smile and ask how you are. No one asks them how they are.
They tell you your HbA1c.
Hopefully this highlights just some of the factors that might contribute to patient disempowerment in traditional diabetes appointments and shows how telehealth might flip some of that experience around to put the patient in control.
The most common workflow being used by multidisciplinary teams in the webinars I watched seemed to be the diabetes educator or medical assistant “reaching out” to patients a day or so in advance of their diabetes telemedicine appointment, to walk them through device uploads.
Some doctors said it wasted a lot of time if the patient had not uploaded prior to the appointment. Others, perhaps with different workloads or practice environments, said they had found it valuable to spend an entire appointment with their patient getting them comfortable with the device upload procedure and showing them how to interpret the data. And then doing a follow up appointment two weeks later.
The idea of uploading in two weeks was something they’d raised before but very few people did it. Now they were uploading. Because they could.
One endocrinologist said by the two month mark, he was having full days worth of patients who came to their telehealth appointments with all their data ready. The turnaround was fast once the pain of the upload process was addressed.
For a number of clinics, in face to face encounters, the diabetes educator typically only saw the patient after the doctor’s appointment if the doctor deemed it necessary, eg to discuss pump or CGM options. With telemedicine, the diabetes educator was now seeing them first to facilitate the device uploads and this was giving them a window into a lot of diabetes behaviours. From the webinars I watched, this seemed to open up a lot of helpful avenues of discussion and be a major contributor to patient learning and autonomy.
This blog post has focussed mostly on issues of power dynamics and therapeutic improvements due to the ‘shared screen’. There have been plenty of expert commentaries from healthcare providers in webinars, but so far, scant input on the telemedicine experience from people with diabetes themselves.
Twitter discussions offer a starting point – a window into the experience – and the main takeaway is that there is a lot of variation out there in the community. This blog post has been a US centric view based on webinars involving clinicians who are actively embracing screen-sharing, remote monitoring technology for telemedicine. There are a lot of issues still to be solved, including access to diabetes technology.
But as one clinician remarked, “The tech to do this has been available for a decade. Licensing, billing and regulators have been limiting it.”
“We need to get automated insulin delivery systems out to patients with phone control and perpetual connectivity. That kind of technology exists and it’s the regulations that have been slowing it down.”
From my perspective, diabetes has been a behavioural, human-computer interaction issue for many years, and it’s a relief to see that is is finally it’s being addressed as that. My life with diabetes was transformed when I started using Nightscout and was finally able to visualise and interact with my data. Regardless of the system used, I’m thrilled that more people with diabetes are getting access to useful information that puts them in control.
And I can’t wait to see what telemedicine brings next… automated decision-support… in-app automation… realtime, just in time support… learning environments rather than medicalisation… seeing diabetes as something to be tackled together. Diabetes therapy delivered where the diabetes is – in the 24/7 minute by minute living of a life.
Crossen S, Raymond J, & Neinstein A. (2020). Top 10 Tips for Successfully Implementing a Diabetes Telehealth Program. Diabetes Technology & Therapeutics.
Dubner S. The Doctor Will Zoom You Now. (2020) Freakonomics.
Tenderich A. (2020). Virtual Nation: Telemedicine’s Breakout Moment. Journal of Diabetes Science and Technology.
Tidepool webinar series – tips on telemedicine, interpreting diabetes data, mental wellbeing, diabetes tech design.