Blog
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. 💙
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.
Questions for (Diabetes) Companies
Photo by Clark Tibbs on Unsplash
For the past few years, I’ve had the incredible honor of being asked to mentor and collaborate with different Diabetes companies on their person centricity – both large and smaller ones.
Providing Diabetes companies with the person with diabetes (PWD) insights, experience and expertise is (or should be?) very valuable to the companies, and should be an integral part of said company’s strategy and communications.
20 Questions for (Diabetes) Companies
Today, I thought I’d share a few of the questions I consider with these companies with you:
- How does the company collect and incorporate PWD feedback into their product development process?
- What strategies does the company use to ensure your services/products are designed/co-created with the PWD’s needs as a primary focus?
- How does the company educate and empower PWD to make informed decisions about their health using the platform/solution?
- Does the company have a PWD advisory board or any formalized PWD involvement in their decision-making process?
- What measures does the company take to ensure the privacy and security of PWD data?
- How does the company measure PWD satisfaction, and what key metrics do they track?
- How does the company ensure that their technology or service is accessible and user-friendly for PWD of all demographics, including those with disabilities?
- Can they describe any specific initiatives or programs aimed at increasing PWD engagement with their service or product?
- Can they share any success stories where PWD involvement significantly improved an outcome or aspect of their service?
- What are the future plans or upcoming initiatives to enhance PWD involvement in the company?
- How does the solution personalize care to meet the individual needs of each PWD?
- How quickly can PWD expect to see changes or improvements based on their feedback?
- What communication channels does the company use to interact with PWD, and how do they ensure efficacy?
- How does the compnay ensure that their services/products are culturally sensitive and appropriate for diverse populations?
- Can they provide examples of how PWD involvement has led to improved health outcomes?
- What strategies does the company have in place to retain patients and ensure the PWD’s continued engagement with the product/service?
- How does the company handle PWD complaints or negative feedback, and what processes are in place to address them?
- Do they involve PWD in the user testing phase of the product development? If so, how?
- How does the company support people with diabetes regarding ongoing healthcare needs?
- Does the compnay collaborate with PWD organizations or advocacy groups to improve their offerings? If yes, how do these collaborations impact the product/service?
Which questions did I miss? Let me know in the comments!
What Strange Things Impact Your Blood Sugar?
What are the STRANGE things that make your blood sugar go either up or down, high or low? 🤔
In this week’s Type 1 Thursday 💙 we discuss our personal experiences, based on Adam Brown’s graphic “42 Factors that Affect Blood Glucose”🩸
While some of these factors may be strange ones to impact blood sugars, I, of course, thought we should take it a step further. With diabetes being such an individual condition to live with, I wanted to know what the strange things are that impact YOUR blood sugar?
I asked this on my Instagram Stories, and got some amazing replies!
We’ll stick to the same categories as Adam uses in his graphic; food 🍽️, medication 💊, activity 🤸🏼, environmental 🌿, biological 🧬, and behavioral 😄, adding our own strangest things that impact blood sugars!
Strange Food Impacts
Let’s start with food because it is such a fantastic thing! I love food so much – I love eating food, enjoying food, everything. Because diabetes is such an individual thing to live with, I wanted to know what are the “strange” foods for you that has an unexpected impact on your blood sugar? Perhaps it probably shouldn’t have an impact, but definitely does?
Starting with your replies to my Stories, the first one is (of course!) porridge, or oatmeal. It really shoots people high in terms of blood sugar, and then someone said that they come down really low afterwards. Someone else said that “it’s not that healthy because it shoots you up to so high”. This is definitely a thing and I don’t think it’s unusual. Bread was another example, as well as pasta (starting to sense a theme here!) These are also blood sugar killers for myself, and dosing the correct amount of insulin for them is really hard (plus I’m quite gluten sensitive. The gluten free versions are almost worse because they have an even higher carb count because it’s made out of corn and and rice flour instead of the wheat.). Even the more complex carbs are not that easy. While many people seem to be able to eat it without problems, so it’s not always impossible! It just means that it’s a bit more challenging and you have to find the way that works out for you.
For me personally, a strange (although not so uncommon) thing to impact blood sugars is caffeine. I really do notice when I’ve had caffeine and not. Probably the strangest one I have in my repertoire is raw cabbage. If I eat raw cabbage, it will spike me, but if it’s either cooked or treated somehow, it won’t. This is a really interesting thing to me. I have no idea why. but I’m guessing it’s because of the vitamin C in the raw version impacting the sensor reading more than tactual blood sugar. But I’m not sure if that’s true at all. The opposite seems to work for boiled carrots being a bit of a challenge. But raw for some reason works for me. I just had two smaller raw carrots without any changes in blood sugar. difference.
Also, for me recently, maltitol, the sweetener that is supposed to have zero blood sugar impact, really does spike me quite horribly. Even if things say “sugar free”, “low carb” and even “keto”, it’s not a free grab-and-go, no, no, no! I still have to look at the label and not take it for granted.
However, when I was young, we had a science experiment in school where we grew some sprouts (alfalfa?). I remember eating those and my blood sugar would actually drop. I wonder if anyone else has noticed that? I’m guessing it’s somehow related to, intestinal flora or gut flora or something like that? (If anyone else knows what’s going on there, please do share!)
Medications…
The only one I can I can really say is that some antihistamines cause a raise in blood sugars. And, of course, certain interactions, like for example, steroids make you more insulin resistant, which is not really that strange, but can be unexpected.
If you have any medications that unexpectedly raises or lowers their blood sugar do share!
Strange Activity Impacts
This one is a bit funny. Every time I vacuum my blood sugar plummets (and I know I’m not alone in this but I don’t see mentioned much)! I don’t understand what it is about it? Maybe it’s just my really vigorous, pissed off version of vacuuming that makes my blood sugar low? I always have to ask my husband to do it and I trade for something else, just so I won’t go low.
Environmental Factors
Someone commented about how cold weather makes their blood sugar go low. For me, it’s almost the opposite. Cold weather makes my blood sugar go high, whereas a warmer weather lowers it. I’m guessing for this person that sent in that comment, it’s the other way around? That’s really interesting, because sometimes you just really feel like the weather impacts your blood sugar. And you know what it really does! This is strange to me, because technically it shouldn’t. Anyway, this can, of course, be during sleep, too. If it gets too warm in the room while you sleep, or too cold your blood sugar also react according to your personal weather blood sugar reaction profile.
Strange Biological Factors
The biggest one here, of course, is stress and anxiety. I always say, and I feel like a broken record here, that it is blood sugar killer number one. It can really make or break your blood sugar levels. That’s why stress management and stress relief is so important in diabetes care for me. Stress and anxiety raise my blood sugar, no matter whether it’s a hard meeting with with a boss or for a project, or even something fun like holding a workshop or public speaking engagements, stuff like that. Or you know, it can be just family, which can be a source of stress and anxiety! Another comment is that “anxiety comes in when my blood sugar is low”. Hypo anxiety is absolutely 100% real. Dreams can really impact your blood sugar, if you have a scary dream, you can get really stressed and scared.
Something personally stress-inducing for me right now is dealing with my health insurance. They’re being the acronym of PITA, which is highly applicable to them right now! Dealing with health insurance, or diabetes admin in any way or form is a form of stress and anxiety.
“For me everything raises my blood sugar” Yeah, that’s actually very true. But also quite biological. As we only have one thing to lower our blood sugar, which is insulin, and there are four or five other hormones in our bodies that raise it. Meaning that insulin is fighting a hard fight on its own! This gets especially challenging if you then don’t, in addition, produce the insulin and have to be a pancreatic understudy. So it’s really not easy.
Someone sent in this fantastic comment in my Stories, that petting animals, because it reduces stress, really increases their insulin sensitivity. I love this because I love the reason so much!
Hormones…
It’s really interesting, and I’m only bringing it up, not because it’s that strange, because, you know, it’s biological (and logical?), BUT because there’s so many people who don’t maybe have it in the back of their minds. Periods, PMS/T – times of the month – but also time of life (puberty, pregnancy, menopause…) can also really impact blood sugars. See it as a small reminder to track your cycle quite closely. That way, you can be more proactive rather than reactive in caring for your blood sugars.
Another biological reason for strange blood sugar impact is jetlag. Your blood sugar can go up or down depending on timezones and traveling across them. And it really doesn’t seem logical at times! Unrelated (but perhaps not after all?), have you ever noticed that your vitamin D levels can impact your blood sugars, as well? If your vitamin D is too low, you can be more insulin resistant, for example. When it is in a normal range, or in a good range, then you are more sensitive (I know this has been a topic on Instagram a while ago!).
Strange Behaviour
There are a lot of things that you can do behaviorally, that may or may not help you in caring for your blood sugars! My biggest example here is being out of your normal routine and how that impacts your blood sugars. It can make it more difficult and more challenging to keep blood sugars that you are used to as normal. That can also be of course due to jetlag, or something like that, of course. But also, if you need to do something different, I’ve had two very early mornings here in the past couple of weeks, where I had to get somewhere else for a meeting, and that definitely changes my blood sugar management for that day, only because I’m out of my routine and comfort zone.
I’m loving all these fantastically weird and wonderful things that impact blood sugar levels for you guys, and for myself, as well. I hope you’ve learned something!
What did we miss?! Leave a comment and let’s chat more. 💬
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.
blood sugar, impact, strange, insulin, diabetes, anxiety, stress, blood sugar levels, biological, jetlag, high, routine