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A Seat at the Table: The Power of Patient Advocates in Innovation

From “Subjects” to Stakeholders

Not long ago, people living with diabetes were seen primarily as recipients of care, (royal?) subjects of studies. We were “just” individuals to educate, treat, and monitor. Decisions about technology, policies, and priorities were made for us, not with us. #nothingaboutuswithoutus !

But something is shifting, even if ever so slowly.

Today, more PWD are stepping forward as partners, advisors, and innovators, helping to reshape how healthcare systems think, build, and deliver the care we need.

This isn’t (and can’t be!) tokenism or public relations. It’s strategic collaboration, transforming diabetes care from the inside out.

Why Patient Advocates/Lived Experience Matter

Patient advocates bring something no textbook can teach: lived experience combined with systems insight.

We can often:

  • Understand daily realities of managing diabetes; friction points, workarounds, and emotional costs.
  • Speak the languages of both patients and professionals, bridging worlds that often misunderstand each other.
  • Identify unmet needs early, and long before data reveals them. We are often waiting for the science to “catch up”.
  • Bring accountability and empathy into every stage of innovation/care/process/continuum.

In short, advocates make health care smarter, faster, and more human.

From Conference Stages to Design Sprints

I’ve been privileged to contribute as a patient advocate at international forums like ISPAD and EASD (much thanks to #dedoc° Voices) where scientific leaders and industry innovators gather.

Each time, one insight becomes clear: when patients have a seat at the table, conversations change.

A discussion that might once have focused on clinical endpoints suddenly includes additional and real-life relevant questions like: “How will this fit into someone’s daily routine?”, “Will people trust this technology enough to use it long-term?”, “What would success look like from a patient’s point of view?” Ultimately, the question needs to be: “Does this solution a c t u a l l y solve a problem in the person’s every day life?“

These Q&A’s aren’t minor details, they are rather make-or-break factors for adoption, continued use, and real-world outcomes.

Innovation Through Co-Creation

True innovation doesn’t happen in isolation; it happens in collaboration.

When lived experience advocates co-design with clinicians, researchers, and industry, the results are more relevant, usable, and impactful.

Examples from across health care show this clearly:

  • Digital tools redesigned with lived experience panels have doubled engagement rates.
  • Education programs co-created with people living with chronic disease see higher retention and satisfaction.
  • Policy frameworks built with patient representatives are more equitable and better adopted.

Person-centered design isn’t just ethical and buzzword of the season; it makes care more effective.

Value-Based Healthcare Needs Patient Voices

In Value-Based Health Care (VBHC), outcomes are defined as what truly matters to patients, with the right treatment, at the right time for the right person.

So how can we define value without the crucial input of lived experience voices?

Including advocates in decision-making ensures that “value” reflects lived realities, and aids in balancing cost, quality, and wellbeing.

Who can better help in:

  • Setting meaningful outcome measures (PROMs & PREMs).
  • Ensuring language and data collection are accessible and respectful.
  • Evaluating new interventions through a real-life lens of usability and trust.

…than those of us who live with the condition in question 24/7/365/…?

In VBHC, co-creating with advocates isn’t optional; it’s essential to the whole infrastructure.

The Challenge: From Invitation to Integration

Many organizations now invite and include patient voices at some point in their development process, and yay for that small win! Yet, not all stakeholders integrate them.


True partnership goes beyond “one seat at the table”, but further requires:

  • Equal preparation and access to information.
  • Transparent processes and shared decision-making power.
  • Compensation (!) and recognition for expertise.
  • Continuous dialogue, not one-off consultations (a pet-peeve of mine!)

Because advocacy without influence is decoration, a check box activity, and certainly not collaboration.

Why This Work Feeds (Some) Hope

When advocates and experts work side by side, something powerful happens: trust is rebuilt.

Systems begin to listen differently.

And innovation stops feeling like it’s happening to patients and starts happening with them.

That’s the kind of health care culture we all seek and deserve, in my opinion.

Join the Conversation

How are patient advocates shaping innovation where you work?

And if they’re not yet at the table, the important question becomes what’s stopping you from pulling up a chair for them?

Share your thoughts in the comments or connect with me on LinkedIn or Instagram @hannadiabetesexpert.

Let’s build health care innovations that begin with humanity.

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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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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!

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Recent Insulin Pricing Changes

What are your thoughts on the recent insulin pricing changes in the USA? Let’s discuss and see what else needs to be done to safeguard the new insulin pricing. BUT – this is not about me sharing my opinion on this (that’s just effing ridiculous because I have no clue!) I want to hear from you – let’s discuss in the comments!

Throughout March 2023, both Eli Lilly and Novo Nordisk (and since I wrote this, also Sanofi!) have announced insulin pricing reductions of 70-78%. (just in case you’ve been living under neath the rock in the diabetes community lately!) These three players make up 90% of the insulin production in the world. They are really the ones that can make a difference for so many people, including people like you and me, and everyone that do rely on life supporting medications such as insulin.

These recent insulin pricing changes are a fantastic first step! It’s so needed in the community. (However, let’s look forward and see where we go from here (more on that further down))

At the same time, I am wondering why these insulin pricing changes are only happening now? There’s been pressure on these big companies from many different sides in the US and internationally, not least through a T1International with Elizabeth Pfiester at forefront of the barricades, so to speak, fighting for this to happen. This is definitely influenced and done by diabetes advocates, such as you and me, sharing our opinion and signing petitions and sharing content that ultimately put pressure on these companies. We have something to be proud of, even the ones of us who are not in the US! We are still cheering you on from the sidelines, so happy for this development. In my opinion, these decisions were really pressurised by advocates, along with the development of biosimilar insulin producers (smaller companies that are in the process, or already are, producing insulins that work very similarly to the ones protected by the big insulin producers).

Furthermore, why stop at insulin? Insulin is, of course, the one thing that we do need to live. Technically, we don’t necessarily need insulin pumps, CGM’s and stuff. But what about pricing of these enormously helpful tools and technology? I realise that there is a lot of profit to be made from living with this lifelong condition – I get it. But why not try to alleviate the burden of living with diabetes further and change the pricing structure on these, as well? Insulin, YES, a fantastic first step! But let’s keep going.

In the light of that since 2002, these insulin prices have tripled. In 21 years, the price has tripled. To me, the notion and opinion that insulin pricing legislation is needed in the US, only makes sense as a next step. I do believe that is something that we will see – hopefully pretty soon! Realistically, I think it might still take some time.

Another question that I’ve seen floating around is whether or not the discount cards for the different insulins will be removed or if they’re going to be kept? This is, and I guess remains closely linked to the status of health insurance in the US, which is a very complex, highly complex matter (especially in the eyes of a very, in comparison, privileged European resident.)

The recent insulin pricing change will definitely save lives. Every person with diabetes who is insulin dependent in the US, will see the effect of this and it will make sure that they do have a fairer access to their life saving medication. I do hope for the sake of these big companies that the new insulin pricing is not just a PR stunt, that it is actually real, and they will help to save lives.

On the other hand. one can’t deny that the high insulin pricing has cost a lot of lives, effort and energy. These pricing changes won’t bring back the people who have passed away due to rationing their medication. Who had to not get the insulin because of the costs, and instead had to prioritise other costs. No matter the actions made now, there are so many forever heartbroken parents, siblings and children who will never get that significant person in their life back. However, at least this can maybe prevent many more from going the same way.

While the insulin pricing point is lowered by 70-78%, respectively, we have to remember that the production price of a vial of insulin is $3-6. In the future, paying $50-60 for a vial of insulin is still (ridiculously) much profit for these companies. I’m certain we won’t see any bankrupts happening with these pricing changes! (At the same time, I have been wrong before, so let’s see what happens.)

I’m trying to share my picture here. But I am also very far away from the US. I live in Europe in a very privileged country when it comes to insulin pricing. While I both sympathise and am empathic with the insulin pricing there, I will never understand exactly how it is. I live in Europe, and in Switzerland more specifically. I am almost ashamed to say how cheap my insulin is! For a five week supply, the full list price is the equivalent of $40, of which I pay 10%. So I personally pay $4 for five weeks of insulin, very much thanks to the private health insurance system that we do have here. (It’s mandatory for everyone to have a private health insurance in Switzerland. Of course, you pay a lot but on the other hand, you do get a lot back in return.) Same in for example, our Scandinavian counterparts, where I originally am from, or the NHS in England, where they have an universal healthcare system, where all medications are for free. Canada and Mexico aren’t affected by similar insulin pricing to the US. I wanted to highlight that there are still huge differences, even with these pricing changes in terms of what and how we can access it.

So in conclusion (and I think we’re all ready for this now!), I am following this with a huge interest. I’m hoping, and my positive little mindset is telling me that this could be a potential start of a huge domino effect. To other diabetes tools and tech and into other condition areas that are affected by high priced medications, as well as into other countries and ensuring accessibility. I’m hoping this is the first step to that!

Also, I can feel in my pinky toe that there will be a US legislation about this quite soon. Senator Sanders & Co just launched another initiative. Let’s see what happens (as similar things have been shut down before). Nevertheless, we are we’re waiting and watching with excitement.

Everyone in Europe and beyond are cheering you on in the US, we are so so happy for this great success. Well done to all advocates and everyone who have helped make this happen.

But yeah, what are your opinions? What are your pluses and minuses? Good, bad, ugly, something in between? frustrations, happiness, tears of joy?

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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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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My Pump Break 2020

Have you ever taken a pump break?

I recently had a six week break from my insulin pump, and I’m not going to lie, going back to MDI (multiple daily injections) wasn’t as easy as I thought!

In this episode of #type1thursday, I share my reasons why, pros and cons of MDI, getting back in the pump, as well as my note-to-self for next time (hint: all of it exciting, none of it smooth…)

My #pumpbreak 2020 – Hanna Boëthius

Share your experiences with me, about pump breaks, MDI vs pump or what you’re most comfortable with?

DISCLAIMER 1: I wasn’t sponsored by any one or any company for this, and paid for all of it myself (with the help of my health insurance, obvi)
DISCLAIMER 2: This is just my own, personal experience. I can’t speak for anyone else, or their experiences.
DISCLAIMER 3: 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 are 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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Tuna Meatzza

I’m making one of my favorite low carb pizzas – tuna meatzza 🍕 (yes, that means the base is made out of canned tuna!)

Don’t knock it until you’ve tried it! 😋 It’s full of delicious protein, fat and some carbs. And – it’s delicious. It’s also the first time I ever cook in front of the camera. 🐒 This week’s #type1thursday is something else…

Let’s go!

Ps. If you want to watch the whole Cook & Chat (not just the recipe), click here to watch it on my Facebook page!

Tuna Meatzza – Type 1 Thursday – Hanna Boëthius

Tuna Meatzza Recipe

Tuna Meatzza base

2 cans of tuna in brine/natural
1 egg 2 tbsp cream cheese
ca 0.5 dl grana padano cheese

Mix all of it until it becomes a smooth mix. Flatten out between two parchment papers, pre-cook in the oven at 180 Celcius (355 Fahrenheit) for 10-15 minutes.

Meatzza Sauce

1,5 dl Ajvar (turkish vegetable sauce)
1 tbsp tomato puree
1 tsp concentrated bone broth
italian herbs
garlic powder
onion powder
a splash of water

Let simmer until it forms a nice pizza sauce

Tuna Meatzza Toppings

Mozzarella cheese (shredded, without starches!) You can use fresh, too, but it gets waterier.
1 red onion
black olives 😋

After pre-cooking the pizza base, spread on the sauce, followed by the toppings and put it back in the oven for about 10 mins.

Enjoy a low carb, nutritious and delicious meatzza! 🍕 🤤

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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Digital Patient Engagement?

I was interviewed by Novo Nordisk regarding how I see the future of patient engagement, as part of their DEEP network.

Check out my views in this short video. What are your views on digital patient engagement – friend or foe? 🤔

https://www.instagram.com/tv/CCWGlNGBTX9/?utm_source=ig_web_copy_link

(This is a sponsored activity by Novo Nordisk. Views are my own)

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