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.