One in three of us lives with a chronic disease, just like my daughter Kim, who has type 1 diabetes.
Fast forward to 2030, what will have changed?
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Jeroen Tas, Innovator
Kim Tas
December 23, 2021
With COVID-19 top of mind for most of us and another lockdown here in The Netherlands, it’s no exaggeration to say that living through this pandemic has been a shared trauma.
Two years ago, many of us went about our days without thinking about our health. Since then, we have glimpsed what life is like for the one in three among us who lives with a chronic disease, like my daughter Kim does every day, every hour.
We are all constantly confronted with our health choices and the threat of disease.
Fast forward to 2030 and Kim has a clear vision of what she wishes for: Dramatically better care, and a cure.
The good news is that we’ve made tremendous progress this year in both fields. So, for my final blog of the year, I get together with Kim to imagine where the future could take us. And what it could mean for you, or someone you know, who lives with a chronic disease.
First, some background. If you follow my blogs, you’ll know that in March 2003, I got a call that every parent dreads: Kim, then 12 years old, had been rushed to hospital. Her blood sugar levels were off the chart, and she was completely dehydrated. She was diagnosed with type 1 diabetes, an auto immune disease, which has no known cause or cure.
Her body had started attacking the essential cells that produce insulin, which meant that at any point during the day her blood sugar could spike or plummet, causing short-term symptoms like tiredness to loss of consciousness or long-term complications, possibly leading to permanent damage and reduced life expectancy.
Since that day, Kim has been trying to manage the disease, which means making up to 200 decisions a day that may impact her health.
“There’s so much power in expanding care beyond our clinical symptoms to include support for mental and behavioral health.” Kim Tas
Jeroen: Imagine it’s 2030. Kim, how has your care changed?
Kim: Like many people who live with a chronic disease, my daily challenge is not only a physical one, it’s also an emotional and mental one.
So, in 2030, I imagine that my care is expanded beyond the clinical aspects of diabetes, like insulin management and dealing with potential complications with my blood circulation, eyesight, and kidneys, to include mental health and health behaviors like eating, drinking, sleeping, exercise and stress management.
The big picture vision for me is first that all my data is combined in one place and I’m viewed as a holistic system.
- In the future, my daily routine has gone from reading measurements, which can sometimes be overwhelming, to a personalized, simple dashboard.
- My phone or wearable gathers all the data and instead of giving me a million numbers, it makes projections and suggestions with the option to deep dive into the data when necessary. It’s not pushy, and I can turn off any notifications if I want to. Some other diabetics I know like those alerts, but I don’t.
- So that personalization of care is crucial.
For me, there’s so much power in expanding support beyond my clinical symptoms to include finding unapparent patterns and forward-looking insights that help my mental and behavioral health
The big picture vision for me is first that all my data is combined in one place and I’m viewed as a holistic system
Jeroen: How much of that support is through technology?
Kim: A huge part will be enabled by technology in the background.
In 2021, I’m lucky enough to have a continuous glucose monitor, which is a device that I wear on my arm.
It continuously measures my glucose [sugar] levels just under my skin and gives me additional insights into where my glucose level was, currently is, and where it’s headed, allowing me to apply the appropriate amount of insulin at that moment.
But it lags behind, so by the time it tells me I need insulin, it’s already a bit late.
- In 2030, my care is fully supported by a closed loop system powered by artificial intelligence to predict rather than looking backward.
I have an under the skin implant that senses when I’m eating or exercising, and automatically gives me the perfect amount of insulin.
It basically replaces my pancreas, and I can get on with my day without thinking about it constantly.
- What I love is that it takes proactive and preventative action: My implant would track data on insulin intake and vitals like my heart rate and rhythm, my breathing rate, movement, temperature, all of which helps me to notice potential issues and manage my stress levels better too.
Jeroen: I can imagine someone with respiratory or cardiac disease could be supported in a similar way.
- When real-time data is combined with historical contextual data regarding your health behavioral patterns, your medications and all the tests and diagnoses you’ve had over the years, you can start predicting what you need.
- Kim: That’s so important. For anyone with a chronic illness, keeping track of the right health behaviors, medication and even the management and reimbursement of medical supplies is something that takes up so much head space.
I only have one disease and I find it hard enough to keep track of it all. Imagine someone with multiple diseases.
- Having, for example, an AI-powered tool that makes sense of all the different medications and the effect they have over time and how they interact — that would be a huge improvement.
- I’ve moved countries a few times in my life, so if the tool could work wherever I am, that would be amazing.
- It would also mean I could see more than just data; I could aggregate and track data and trends over time like what my A1C levels*, cholesterol, thyroid function, etc., were three months ago compared with now and project this into the future.
If lifestyle data such as diet, exercise and stress could overlay the medical data we could get a complete overview. The system then constantly learns and adjusts based on personal data.
“Right now, I’m still the data aggregator and manager. Surely we can do better than that in order reduce the burden and stress on patients?” Kim Tas
I only have one disease and I find it hard enough to keep track of it all. Imagine someone with multiple diseases.
Jeroen: With an AI-powered platform, those insights could also be enriched by breakthroughs in the wider medical world.
You could then get suggestions about clinical trials and new therapeutics and map how they are likely to improve your health and wellbeing over time.
Kim: Yes, research and technological breakthroughs are happening at a rapid speed and it’s hard for medical professionals, let alone for patients to be up to speed.
However, I think tech companies also need to be careful about some of the information and insights they give people. One app I used told me the chance I had of getting certain disease in the future, which just added to my stress.
I didn’t know that my kidneys were so bad and now it’s an extra thing to worry about. They need to be careful with the context and always keep in mind how patients are going to feel about the insights they get.
Jeroen: That’s a good point. With that in mind, what role do you see healthcare providers having?
- Kim: The combination of technology and human care is vital. I’d have one person who oversees it all: The care orchestrator.
With all this various data and information at their fingertips, one person could represent all the people I see today who each know a small part of my story, like the internist, the ophthalmologist, the dietitian, the clinical psychologist.
- Face-to-face and digital health need to be blended and powered by those same data-based insights to give them a holistic understanding of me over time, and into the future.
To them, I’d be a whole person, with all my likes and dislikes, and not just a diabetic with clinical complications.
I think that often people with a chronic disease are not just struggling with one thing, but often struggle with multiple related issues. Together we can strive for better health outcomes, rather than referring me from one to the other.
The combination of technology and human care is vital. I’d have one person who oversees it all: The care orchestrator.
- Does my care always have to come from a person? Not necessarily. That’s an important part of the future and virtualization.
Turn it on and off when you want; when you need to talk to a person and when you want a good bot, that’s fine too.
The most important thing for me is that bridge between the physical and the mental which is enabled by different sources of data.
Jeroen: So that’s how I hope care could be improved for anyone with a chronic illness. But the best-case scenario would of course be a cure.
Kim: Dad, you’ve been following progress on a cure for diabetes for years. Where do you think we will be by 2030?
Jeroen: Type 1 diabetes is an auto-immune disease. We’re seeing some tremendous progress in programming the immune system to defend itself against other diseases.
The Turkish couple that came up with the mRNA COVID-19 vaccine for Pfizer/BioNTech, Dr Sahin and Dr Türeci, had been working on something completely different — cancer therapy — most of their lives. That research helped them to deliver a COVID-19 vaccine in months rather than years. Today, they are still looking into using mRNA to program the immune system to defeat cancer.
With scientists using AI-enabled biotech platforms to design new vaccines, we’re moving from blunt instruments to precision instruments.
My hope is that this could lead to a vaccine that prevents children from developing type 1 diabetes in the first place.
“A new era for type 1 diabetes has begun, which could help us find a cure for other chronic diseases.” Eelco de Koning, professor of diabetology at the Leiden University Medical Center
My hope is that this could lead to a vaccine that prevents children from developing type 1 diabetes in the first place.
One of the most exciting developments has been in using stem cells to develop insulin producing cells.
Our family supports the work of DON, a Dutch organization solely focused on finding a cure for type 1 diabetes.
Recently, I spoke with one of its lead scientists, Eelco de Koning, who is professor of diabetology at the Leiden University Medical Center [LUMC] in the Netherlands. He told me that we’ve entered a new era in innovative treatments for type 1 diabetes.
Currently, one of the only treatment options is to transplant the pancreas or isolated clusters of insulin producing cells [islets] from the pancreas.
But you need to take drugs that suppress your immune system the rest of your life, otherwise the donor pancreas or islets will be rejected.
And these pancreases from organ donors are very scarce. So, there will never be enough pancreases for the estimated 9 million people who suffer from the disease.
Now, for the first time ever, scientists have managed to use stem cells to produce insulin and then successfully transplant them into a person. “It’s early days because we need more clinical trials, but this is a huge milestone in finding a cure,” Eelco told me.
“By 2030, I expect this treatment will be available for the most severely affected patients if there is no safety issue related to the transplanted cells.”
In a recent article in the New York Times, the first man to have this type of procedure said he’s cured. Wow. Just thinking about that possibility makes me emotional.
“By 2030, I expect this treatment (stem cells) will be available for the most severely affected patients if there is no safety issue related to the transplanted cells.”
According to Eelco, this could have huge impact on two other disease areas where this type of stem cell replacement therapy is possible:
- Severe Parkinson’s disease and some retinal diseases, which can cause blindness. While we can’t yet build an entire organ from stem cells, we can use them to replace specific single cells that are damaged.
In Parkinson’s disease, a specific type of hormone in the brain is damaged. It is now theoretically possible to inject stem-cell derived neurons into the brain.
Eelco also thinks that we might be able to combine this approach with reprogramming these stem cells to prevent our bodies from rejecting the transplanted cells. In that case, no drugs to suppress the immune system would need to be taken.
“We ask our patients: What do you want? If Kim wants that, it’s what we should aim for.” Eelco de Koning
Even though the LUMC is focused on finding a cure, they acknowledge the vital role played by mental health support.
Which is why the LUMC has two clinical psychologists on the team. “The future of diabetes teams are people who can influence behavior and how to fit diabetes into your life,” Eelco said.
“We ask our patients: What do you want? If Kim wants a blend of support for the emotional and physical aspects of diabetes, then that’s what we should aim for.”
Jeroen: Kim, if you had to make a final plea to anyone working in this field, what would it be?
- Kim: Start aggregating and integrating data, because right now I still do most of this myself.
Use the data to find the critical patterns that trigger the right interventions. Bring face-to-face and digital support together, make it available 24/7 and expand from the hospital to community health hubs and into the home.
- Jeroen: If I think about the healthcare industry, I’ve to be honest: There is no such thing as a care continuum.
There are many hand-offs that pass the responsibility for the patient to the next provider, but there is no end-to-end responsibility for the patient’s health outcomes.
The orchestration and longitudinal patient view to enable it is missing. While the quality of care has dramatically improved since our current health system was designed mid last century, we have to redesign the system, leveraging technology in a human-centric way.
We need to invest in a trusted, health data infrastructure, which will help us bend the curve on life expectancy by better management of the disease, but also to bend the cost curve by better application of digital technologies at scale.
Most of you reading this blog will know someone who lives with diabetes, or cancer, or a heart or lung disorder.
It means you also know how much it affects their daily life.
Any time I spend with my daughter, I can see how every little thing Kim does has an effect on her blood sugars and vice versa.
How she feels, what she eats, whether she’s stressed. And I think that’s often forgotten: How little things can have such a big effect on outcomes. It’s all interconnected.
So, if I have one plea for 2022 it’s that we approach healthcare in the same way, and make sure that Kim’s vision for 2030 comes true for her, and for the many millions — and billions — like her.
*The amount of glucose attached to hemoglobin
Originally published at https://www.linkedin.com.
Names cited
Names cited:
Dr Ugur Sahin and Dr Özlem Türeci,
Eelco de Koning, who is professor of diabetology at the Leiden University Medical Center [LUMC]
