For One Patient Advocate, What Happens After the Story Matters Most

In 2009, Rosie Bartel’s life changed when a healthcare-acquired MRSA infection led to years of surgeries, hospitalizations, and ongoing health challenges. Determined to help prevent others from experiencing similar harm, she began partnering with healthcare professionals, researchers, and leaders to improve patient safety and elevate the voices of patients and family care partners. 

As Patient Safety Co-Chair of the 2026 IHI Forum, Bartel continues to use her lived experience to advocate for meaningful patient and family partnerships and safer care.

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What is one lesson from your personal journey that has shaped your approach to improving care?

I don't share my personal experience just to be a sad story.

Early on in my journey, people would call me and say, “We would like you to talk about your story and give a five-minute presentation at the beginning of our meeting or our session.” Then it turned out that nothing they were talking about was related to me and my experience.

So I created something I call “storytelling with a purpose.” When people call me and ask me to share my story, I say, “What are you working on? What are you trying to improve? And how is my story going to fit into that?

Then I always tell them that I will be back in three to six months and ask, “How did you use my story to improve?” I’m not a one-and-done kind of gal. You’re going to hear from me again. 

You've spent years helping healthcare organizations understand the patient and family care partner perspective. Have you seen attitudes toward partnering with patients and families change over time?

Yes, definitely. People are more open.

In 2009, I was invited to the table to share my story by an infectious disease doctor who I still see. At the time, he said, “We usually don't air our dirty laundry with a patient.”

Over time, I’ve seen the patient voice get stronger. Now I hear, “We need the stories. We need the stories. We need the stories.” That’s why I do presentations about storytelling with a purpose, but also about story as data, because stories are data, and that improves healthcare.

We’re building stronger and stronger voices every year. At IHI, we now have the Lived Experience Advisory Panel (LEAP), and we’re doing presentations together. Co-design and co-production are alive, and those things really are making a difference. But we still have to work on it really hard. 

I recently had experiences as a patient at two different hospitals that showed me how differently the patient voice can be valued. At one, I didn’t feel the patient voice was reaching the front lines. At the other, everybody was about the patient’s voice. Many times, they said to me, “This is what we think you should do, but you have a choice.”

That’s the standard we should be striving for. We need to get to a place where every patient is empowered to have a voice, not just patients who are strong. 

What have patients and family care partners taught you about improving care that cannot be learned from data alone?

Patients and families have shared tons of stories with me. In an infection rate, I might have been 0.000001 percent. But that doesn’t capture everything that happened to me, and continues to happen to me, because of one infection in 2009.

People need the stories behind those numbers.

That’s why we need patients on patient advisory councils, on boards of directors, and on quality and patient safety committees. Those are the kinds of voices we need.

Every patient should be empowered to have a voice. Healthcare professionals have to understand how important the patient voice is to the work that they do. 

As this year’s Patient Safety Co-Chair, what opportunity do you think the IHI Forum creates for patients, family care partners, clinicians, and leaders to learn from one another?

I would like healthcare professionals who attend the Forum to hear some of the patient stories and learn from them. Don’t be afraid to go to sessions where patients are presenting. You’ll hear their stories and, more importantly, learn how those stories can be used to improve healthcare.

We don’t always bring that patient story to leadership, and people may overlook patient-led sessions because they don’t realize how much they can learn from them. 

I’m part of the PFAC in a Box session at the Forum (MH19: PFAC in a Box: A Comprehensive Tool Kit for Designing Your Patient and Family Advisory Council). So many places still don’t have a patient advisory council. This is a way to help people understand how to create one, including recruitment, orientation and training, and strategic planning. 

I’ve been working with IHI and presenting at the annual Forum since 2010, and every year I feel privileged to be part of it. 

What is one action you hope attendees will take back to their organizations, patients, communities, or colleagues after the Forum?

Listen to the patient’s voice. Really hear it. And don’t forget the caregiver’s voice, too.

During one of my recent hospital experiences, my daughter was saying loud and clear, “This isn’t like my mother. She’s not acting like herself,” but they weren’t listening. That’s why we need to listen not only to the patient’s voice, but also to caregivers.

You may also be interested in:

• Turn on the Lights Podcast: From Patient to Advocate: Rosie Bartel on Transforming Pain into Change
• Storytelling with a Purpose 
• Leading with Love: Katie Boston-Leary on Advocacy, AI, and Advice for Addressing Burnout 
• View the full agenda for the 2026 IHI Forum