Honoring David’s Legacy: A Journey for Patient Safety

By Rosie Bartel

Over the past several years, I have delivered virtual presentations to audiences at the local, national, and international levels. Each year, I consider traveling to Washington, D.C., for World Patient Safety Day to walk—or in my case, roll—onto the U.S. Capitol lawn and place flags bearing the names of individuals affected by medical errors.

After losing my husband, David, to a misdiagnosis of multi-organ terminal cancer on July 28, 2020, I thought I’d never make that trip. David and I had planned to go in 2020, but COVID struck, and then he became ill. I am determined to make the journey this year. It will be bittersweet, but I know his spirit will be with me every step of the way.

Why does this trip hold such deep significance for me? In 2019, Marty Hatlie placed a flag with my name on the U.S. Capitol lawn. At the time, I didn’t know Marty, but he had learned about my story. Since then, we have developed a strong friendship, working together on the Technical Expert Panel (TEP) and the Hospital Recommendation Group for patient safety structural measures from the U.S. Centers for Medicare and Medicaid (CMS). We’ve also co-hosted several virtual webinars on patient safety, including one at the IHI Patient Safety Congress in May 2024, which highlighted age-friendly structural measures.

Thanks to the efforts of Patients for Patient Safety US (PFPS-US) members, who advocated strongly to CMS with recommendations, both patient safety and age-friendly structural measures have been passed by CMS for implementation by 2025. We are now planning to celebrate their success, which is built around the following five domains.

• Domain 1: Leadership Commitment to Eliminating Preventable Harm
• Domain 2: Strategic Planning & Organizational Policy
• Domain 3:  Culture of Safety & Learning Health System
• Domain 4: Accountability & Transparency
• Domain 5: Patient & Family Engagement

Although Patient & Family Engagement is the fifth domain, we believe it is the most important of them all. This domain promotes a culture of safety by fostering meaningful partnerships between hospitals, patients, and families. It is designed to create systems that are more inclusive, transparent, and accountable, which is essential for reducing harm and enhancing the quality of care.

These are the requirements for the patient and family engagement domain:

1. The hospital has a Patient and Family Advisory Council that ensures patients, families, care partners, and community input is implemented to safety-related activities, including representation at board meetings, consultation on safety goal setting and metrics, and participation in safety improvement initiatives.
2. The hospital’s Patient and Family Advisory Council includes patients and care partners of patients who are diverse and representative of the patient population.
3. Patients have comprehensive access to and are encouraged to view their own medical records and clinician notes via patient portals and other options. The hospital provides support to help patients interpret information that is culturally and linguistically appropriate. They can submit comments for potential correction to their health record.
4. The hospital incorporates patient and care partner input about patient safety events or issues into data collection.
5. The hospital supports the family and other designated persons (as defined by the patient) as essential members of their safety team. They are engaged to take part in activities such as bedside rounding and shift change reporting, discharge or transition planning, and visitation 24 hours a day, when possible.

The work we are doing to strengthen Patient and Family Advisory Councils (PFACs) is crucial to advancing patient safety measures. Adding a patient safety segment to our PX Chats could be a valuable resource for healthcare organizations. Many hospitals are currently struggling with the Patient and Family Engagement domain, as their PFACs have either dissolved or are barely functioning. While adding patient safety to their agenda may seem overwhelming, I believe we can support them in prioritizing safety by co-designing solutions alongside patients and families.

To learn more about the World Patient Safety Day summit in Washington, D.C., September 15-17, go to the Patients for Patient Safety-US website for details, including how to request a flag to be placed on the U.S. Capitol lawn for someone who has experienced medical harm. It is not too late to sign up to be part of this event.

About the Author

Rosie is a widow, mother, grandmother and an educator. In August of 2009 she underwent a total right knee replacement that developed into a MRSA staph infection. This healthcare-acquired infection has led to 58 surgeries, over 200 hospitalizations, 100 blood transfusions, a right leg amputation six inches above the knee, and a total hip amputation with the removal of part of her pelvic bone. Rosie has experienced sepsis and septic shock fourteen times in her health journey.

As she continues to battle this infection in her body, Rosie is driven to share her story of survival. Every day she uses her story to advise or advocate for others. She believes in helping patients and caregivers find their voices. As an educator, she has used stories to teach children and adults. Today, she uses her story to co-design with medical professionals and researchers and to advise and advocate for patients and their caregivers. She was a recent speaker at the International Forum on Quality & Safety in Healthcare in Copenhagen.