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Beyond A1c: Why Lived Experience Should Guide Diabetes Care

The A1c Trap: When Numbers Take Center Stage

For decades, HbA1c, which is a measure of average blood glucose over the past three-or-so months, has been the ultimate marker of “good” diabetes management. It’s printed on lab reports, discussed in every appointment, and often used as a measure of success or failure. Add to this, percentages of Time In Range (TIR), and Time In Normoglycaemia (TING), along with Standard Deviation (SD) of blood glucose values, and we have a perfect sotrm of various metrics.

But here’s the thing: A1c et al. only tells part of the story.

It can’t show sleepless nights after stubborn highs. It doesn’t capture the mental gymnastics of counting carbs, managing stress, or fearing hypos. And it certainly doesn’t measure how a person feels living with diabetes day after day.

If we want to deliver better outcomes, we must look beyond A1c and realted metrics, and start listening to the people behind the numbers

Lived Experience Is Data, Too

In health care, we love measurable metrics. It makes an invisible condition more palpable, something to benchmark, relate to and (gasp!) even compare oneself with. But what about the unmeasured? Things like energy levels, quality of life, resilience, or the sense of doing well?

These aspects are more easily captured through Patient/Person-Reported Outcome Measures (PROMs) and Patient/Person-Reported Experience Measures (PREMs), in other words tools that quantify what truly matters to people living with the condition.

But beyond tools and surveys lies something even more powerful: lived experience.

As someone who’s lived with type 1 diabetes for almost four decades, I’ve seen how personal stories can reveal insights that numbers simply can’t. A lived experience lens helps us understand why a therapy isn’t working for that specific person, how routines fit into real life, and what support is needed to actually make care sustainable.

When we bring lived experience into clinical design, policymaking, and innovation, care becomes real-world ready

Why the System Still Leans on A1c

There are good reasons A1c became a global standard: it’s quantifiable, comparable, and clinically meaningful. But it’s also convenient. Yet, convenience can easily become complacency.

Health systems are often designed to reward what’s easy to measure, not necessarily what’s meaningful to measure. That’s where Value-Based Health Care (VBHC) can change the game.

VBHC shifts focus from volume to value, from “How much care was delivered?” to “Did it actually improve people’s lives?” And to answer that question, we need both data and dialogue.

Real Value Is Human Value

When lived experience guides care, everyone benefits:

  • People with diabetes feel seen and supported, not judged by a number.
  • Clinicians gain richer context to guide decisions and build trust.
  • Systems and payers invest in interventions that create true quality of life improvements.

That’s not “soft” care. That’s smart care, making the whole value-chain of care more sustainable.

A Moment That Changed My Thinking

A few years ago, I was invited to review a hospital’s diabetes education program. Everything looked perfect on paper, with their excellent glycemic outcomes, detailed protocols, impressive graphs.

But when I spoke with people receiving care at this clinic, a pattern emerged:

“I understand the theory. I just can’t make it work in my daily life.”
“I feel guilty when my numbers aren’t perfect.”
“I wish someone would ask what success means to me.”

The gap between what’s measured and what’s meaningful is where we lose people, and casually label them “lost to follow up”. And it’s exactly where person-centered care must step in.

From Outcomes to Impact

Imagine if every diabetes clinic measured not just numbers and A1c’s, but also:

  • Sleep quality and fatigue levels
  • Confidence in self-management
  • Emotional wellbeing
  • Social participation and daily function

These dimensions of health are already used in progressive VBHC initiatives. They transform care from transactional to transformational, because they tell us whether care actually works in people’s lives.

Beyond A1c: A Call for Co-Creation

Moving beyond A1c isn’t about abandoning data, but rather about expanding it. It’s about pairing clinical evidence with human evidence. A match made in real-world management of a relentless condition.

The most innovative health care systems of the future will be those that co-create care with people, integrating lived experience as a cornerstone, not an afterthought.

Because in the end, A1c may show certain aspects of management, but lived experience shows meaning.

Join the Conversation

What’s one thing you wish your diabetes care team measured or asked about — beyond A1c?
Share your thoughts in the comments or connect with me on LinkedIn or Instagram @hannadiabetesexpert.

Let’s make diabetes care more human, together. 💙

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Person-Centered Diabetes Care: The Future of Health

Imagine this…

You walk into your diabetes appointment.

The nurse doesn’t start by asking about your blood sugar levels.

Instead, they begin with:

“How are you coping lately?”
“What’s been hardest for you?”
“What would make life with diabetes easier right now?”

It sounds simple. But it’s still far too rare.

For decades, diabetes care has been built around numbers, not narratives. Around protocols, not people. Around disease, not the person living with it every day.

Yet the truth is this: people don’t live with diabetes in 15-minute (at best!) appointment slots.

They live with it 24/7, constantly balancing data, decisions, emotions, and daily life.

The shift we need: from managing conditions to understanding people

As someone who’s lived with type 1 diabetes for four decades, works within healthcare systems, and advocates for better outcomes, I’ve seen firsthand how transformative it can be when care becomes truly person-centered.

But let’s be clear: person-centered care isn’t just a warm-and-fuzzy slogan. It’s a strategic, evidence-based approach that recognizes each individual’s values, goals, and lived experience as essential data points in care delivery.

When we shift the focus from “What’s your A1c?” to “What matters to you?”, a lot has the possibility to change.

What person-centered diabetes care really means

Person-centered diabetes care goes far beyond being “nice” or empathetic. It’s about co-creating care that fits a person’s life, and not forcing life to fit the care plan.

It means:

  • Listening before prescribing, starting with the story, not the statistics.
  • Co-designing goals based on what’s meaningful to the person, not just what’s measurable.
  • Acknowledging mental load, recognizing diabetes distress, burnout, and the emotional side of chronic management. See the recent Clinical Guidelines on Diabetes Distress by EASD for more info here!
  • Building trust and partnership, making the person an active participant, not a passive recipient.

This approach aligns beautifully with Value-Based Health Care (VBHC) principles, where success is measured not only by clinical outcomes (CROMs) but also by Patient-Reported Outcomes and Experiences (PROMs and PREMs), comprising a key reflection of whether care delivers outcomes that matter the most.

Why person-centered care leads to better clinical outcomes

Research consistently shows that when care is person-centered:

  • People are more engaged in caring for themselves.
  • Clinicians experience less burnout through meaningful partnerships.
  • Health systems achieve better outcomes per unit of cost.

But beyond metrics, the human impact is undeniable. When we feel heard, respected, and seen, we are more motivated to manage our health, leading to a transformative shift.

A story that stays with me

A few years ago, I spoke with a young woman who was newly diagnosed with type 1 diabetes. Her first appointment focused entirely on insulin doses and carb ratios. When she finally asked, “Is it normal to feel completely overwhelmed?”, the nurse replied, “Let’s not get into that right now.”

That moment shaped her trust in the healthcare system, along with her ability to engage with it, for years.

Person-centered care could have changed that story.

The relatively simple question of “how are you doing with all this?” could have opened the door to understanding, support, and hope.

The future of diabetes care is relational, not transactional

The next frontier in diabetes care isn’t another app or device (although innovation has and continues to help the daily management extensively).

We need to start looking further, toward a cultural shift from systems that treat to systems that partner.

When care teams, patients, policymakers, and industry collaborate around shared goals and lived experience, diabetes care becomes not just effective but increasingly human, which is much needed in a world that is increasingly driven by AI tools and solutions.

Let’s rethink care, together

So, what if diabetes care actually started with the person?

What if every clinic, policy, and innovation began with one simple question:

“What matters most to you right now?”

That’s the future I believe in. It’s the one I’m working toward through advocacy, education, and collaboration.

Over to you

What does person-centered care mean to you (as a healthcare professional, person with diabetes, caregiver, pharma, policy maker, or insurer)?

Share your thoughts below or connect with me on LinkedIn or Instagram @hannadiabetesexpert. Let’s move this conversation, along with diabetes care, forward.

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Brittle Diabetes?

Have you ever heard of brittle diabetes?

What is it? What are the signs? How can you get out iof it?

Brittle Diabetes – Type 1 Thursday – Hanna Boëthius

Although the term “brittle diabetes” is wildly discussed and can come across as very negative and blaming, it’s a concept many people with diabetes (unfortunately) are familiar with. Perhaps you’ve been labeled “brittle” in your medical file, just lika I have in the past?

What can you do about it, then? Is it just to accept it and trry to live as peacefully as possible with it?

Au contraire!

Brittle diabetes can very well be dealt with, and removed from your life, too. It all depends on what the cause if for you. A few common causes of brittle diabetes are medication troubles, stress (blood glucose killer number 1!) , eating disorder, gastrointestinal issues, gastroparesis or insulin sensitivity, to mention a few.

Once you know this, try to look at what lifestyle changes would apply to you – nutrition, medication, movement, mindset, stress management… are a few points to keep in mind.

Share your experiences with me! What’s your number one trick for brittle diabetes?

Disclaimer
The only purpose of this website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.

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#WEGOHealthAwards

Pinch me…!

I’ve been nominated for not one, but THREE #WEGOHealthAwards!🎉 : “Best Kept Secret”, “Patient Leader Hero” and “Best In Show: Instagram” 💖

Aaaand, endorsements are now open for the 9th annual WEGO Health Awards!

I’d be over the moon if you would want to endorse me for either (or both!) of these awards.

You can do so by:

☝️ clicking this link: https://www.wegohealth.com/HannaBoethius

✌🏼 click “Awards” in the upper right hand corner

🤟🏼 Endorse!

Thank you from the bottom of my heart to those who nominated me, as well as to YOU for endorsing. 🙏✨

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“Why are you so harsh on yourself?” 😳

I got a DM on Instagram recently, where the (probably) well-meaning person asked something along the lines with “why are you so harsh on yourself when it comes to diabetes?” 😳

It was implied that I pay too much attention to things like blood sugars, nutrition and HbA1c, when “all you have to do is count carbs and cover for them with insulin.”

Well. I don’t agree. 🤷🏻‍♀️ To me, that is a way too simplistic way of looking at managing something as individual as diabetes can be. Check out the rest of my answer in this short clip:

https://youtu.be/vMiX2ykf170
Type 1 Thursday – Hanna Boëthius

👉🏼 What tools have you found that work the best for you in your diabetes management? 👈🏼

Disclaimer

The only purpose of this video and website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This video and website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.

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“How Do I Prevent High Blood Sugars Working From Home?”

Today’s question is from Taylor, and she asks: “how to prevent high blood sugars while working from home? And not only by increasing insulin?”

Tricky, tricky indeed! And welcome back to another episode of Type 1 Thursday!

Essentially, what’s at the root of this question is how to improve your insulin sensitivity. And luckily, there are many lifestyle choices you can make to improve exactly that (even without necessarily just upping your insulin). And a lot of it comes down to prioritizing yourself.

As a note insulin requirements, however, is that you need the insulin that you need. Period. Whatever the situation, changes in routine, stress etc that makes your blood sugars run higher than normal, your body needs more insulin. I know way too well how hard this can be to accept, I’ve been there. Many times! But in order for your body to run optimally, it needs varying amounts of insulin at varying times. Try to meet this need with compassion and curiosity (and the necessary insulin, of course)!

Limiting high blood sugars when working form home – Type 1 Thursday – Hanna Boëthius

👉🏼 What are your best tips to increase insulin sensitivity? Let’s chat! 👈🏼

Lifestyle choices that help insulin sensitivity include, but are not limited to, the following:

🌟 Stress management (try meditation, yoga, EFT, essential oils, bath…)
🌟 Movement (focus on body weight moves!)
🌟 Hydration (lots of clean water can help insulin sensitivity)
🌟 Sleep (both quality and quantity!)
🌟 Healthy and blood sugar friendly nutrition (low carb)
🌟 Any supplements? (Magnesium, Omega 3 & Vitamin D is a rule of thumb)
🌟 Find a routine that fits YOU

Disclaimer

The only purpose of this website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.

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Live Q&A with Hanna

You have been asking me to do a Live Q&A on my Instagram Stories! And now I made it a reality.

Find out my answers to your questions on this weeks #type1thursday !

I’ll happily answer most and any questions about diabetes, lock down, blood sugars, tools, tips & tricks, me – anything you want to know or have my opinion on! 😃

Live Q&A with Hanna Boëthius on Type 1 Thursday

Q&A

You’ll find out my answers to these questions:

🌟 Do you find your diet restrictive?
🌟 What insulins have you had since diagnosis?
🌟 How well do you think you manage your diabetes?
🌟 What is the hardest part of being diabetic? The best part?
🌟 Does your diabetes cause you any other problems?
🌟 What would you like a non-diabetic to know about having diabetes?
🌟 What would you tell someone who has just been diagnosed with diabetes?
🌟 Who do you get support from? Who treats you?
🌟 Have you got any tips for keeping teens interested in their care?
🌟 Were you low carb in your teens?
🌟 When and why did you start coming back to caring better for yourself after dodgy teens?
🌟 How do you bolus for protein/fat?
🌟 Would you recommend low carb to T1D kids?
🌟 Are you using a slower insulin than Novorapid for protein and fat?
🌟 Do you eat a lot of snacks and what would they be?

Do you have any questions for me? Let me know!

Disclaimer

The only purpose of this video and website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This video and website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.

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Double Diabetes, Double The Fun? 😳

What on Earth is Double Diabetes? How does it develop, and who is at risk to get it? Are there ANY solutions to it?

Learn this and so much more from this week’s episode of Type 1 Thursday:

https://youtu.be/HmgNFm34Q44
Double Diabetes – Type 1 Thursday with Hanna Boëthius

What is Double Diabetes?

Double Diabetes is when a person with Type 1 Diabetes develops severe insulin resistance. They may need to use medications that are traditionally used for Type 2 Diabetes, essentially having developed both types of diabetes – hence the term Double Diabetes.

The problem is that T2D can’t really be diagnosed in T1D, no glucose tolerance test or blood insulin measurements will be accurate. Instead, the clinical diagnosis goes a little something like this: do you need a lot of insulin? IS your BMI high (although BMI isn’t even a reliable measurement!), Waist to height ratio high? High blood pressure= Fatty liver? High HbA1c?. If you are T1D and do have these, you could be in the risk zone for Double Diabetes (and no, it isn’t double the fun!). Whether the insulin resistance comes from T1D, lifestyle factors or it’s genetic, the result is the same.

Are there any solutions to Double Diabetes?

We know from the T2D, some cases of it can be reversed with lifestyle changes. But T1D will always persevere. My top tip to cut down the insulin resistance would be to decrease the amount of carbs you eat. It works (and is an acknowledged treatment) for T2D, which is half of the issue!

I actually think I was a Double Diabetic before I changed my lifestyle in 2011. Since the term was coined in 1991, there hasn’t been much activity in this field until very recently, so I was never diagnosed. But I needed an almost obscene amount of insulin, along with the other symptoms mentioned above… 🤷🏻‍♀️

Have you heard of Double Diabetes before? Do you have any experience with it? Let me know in a comment!

Disclaimer

The only purpose of this website and video is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This website and video is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.

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The Ultimate Diabetes & Alcohol Toolkit

…or, “You can also have fun WITH alcohol!”

Yes, you can absolutely drink alcohol, even if you have diabetes. 🍷🥂 🍸

The main point to remember is – alcohol impacts the liver in doing its job of regulating blood sugar.

The main function of your liver is to store glycogen, which is the stored form of glucose, so that you will have a source of glucose when you haven’t eaten. The liver is also responsible for cleaning the body of toxins. Unfortunately, the liver cannot do both jobs at the same time. While it is detoxifying, it stops secreting glucose.

The Ultimate Diabetes & Alcohol Toolkit – Hanna Boëthius

Here are some helpful tools to add to your diabetes management toolkit, alcohol specific:

🌟 Keep an eagle eye on your blood sugar, before, during & after drinking.
🌟 Know what’s in your glass, alcohol % and carb count Stick to dry wines/bubbly, light beers, or liquor with club soda or diet drinks. It makes all of it easier!
🌟 Wear medical alert bracelet/jewelry, just in case.
🌟 E N J O Y your drink!
🌟 Keep hydrated
🌟 Enjoy some food or snacks with your drink
🌟 Bring glucose tabs with you .
🌟 Don’t drink alcohol if your blood sugar level is low
🌟 Don’t skip food 🌟 Don’t necessarily drink alone – alcohol is best enjoyed in company! (Also someone to check up on you.)
🌟 Avoid sweet drinks, craft beers, sweet wine… Concentrate on having FUN, not worry about how high your blood sugar will go.
🌟 Don’t drink and dance (without food)!
🌟 Don’t play around with meds.

I enjoy alcoholic beverages, and sticking to low sugar options (dry wine or mixed liquor) works the best for me. That way, I can concentrate on ONLY caring for the alcohol part, and not having to additionally care for the carb count/hyperglycemia. I usually drink with food, as part of a meal/aperitif.

What are your views on diabetes and alcohol? Do you enjoy alcoholic beverages, and do you have any tips to share? Or do you steer clear from it? 🤔 Let me know in the comments!

Transcription

If you prefer to read the information, here is a text version of the video above:

Coming soon!

Disclaimer

The only purpose of this video and website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This video and website is provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.