When Patients are Missing from Patient Safety

By: Catherine Hinz, Executive Director & Lisa Juliar, Patient Partner

Our patients and their families have been remarkably absent as a major partner in creating safe healthcare. It is not because they don’t want to be included in solutions to safer care. It is simply because we don’t often invite them to be part of the team.

I’ve spent the better part of ten years working inside organizations to improve patient safety. In 2009, as an eager newly minted MHA graduate with a specialty in human factors engineering, I was determined to enter an organization and solve the patient safety problem. Quickly, I realized that the complexities of our care delivery system combined with the sluggish pace of change was going to make it a longer road than I had hoped.

I entered the industry about half-way into its rising momentum from the 1999 publication of To Err is Human, a seminal report that accelerated an industry-wide movement to improve safety.  It was primetime as organizations jumpstarted initiatives for the prevention of events that included falls, wrong-site surgeries, pressure injuries, retained foreign objects, patient misidentification, lost lab specimens, diagnostic error, and more. Health system operations were constructing councils and programs to address safety. They weren’t alone. External accreditation bodies and regulatory agencies were also picking up speed to address safety improvement. The Leapfrog Group, founded by large employers and payers, jumped into the scene in 2000, advocating for transparency and safety improvement. The Joint Commission’s National Patient Safety Goals had been established (2003), Centers for Medicare and Medicaid developed their hospital-acquired condition list that was designed to affect reimbursement (2008), and the U.S. Department of Health and Human Services launched the Partnership for Patients with an ambitious goal of a 20% reduction in all-cause harm (2014).

Back inside our delivery organizations, we thoroughly investigated and analyzed safety events. By diving into each event, we diligently designed and implemented action plans. We developed new safety standards and audit procedures. We brought in subject matter experts to help us capture every opportunity for improvement. We streamlined processes and shored up weaknesses; we hired expert consultants. Agonizing over the details of our adverse events, we were committed to ensure we did everything possible to prevent safety events for both our patients and providers. We improved process encircled by our leaders, clinicians, and expert staff.

However, in my decade of leading safety improvement efforts across a variety of organizations, I didn’t have any interaction with the patients or families involved in harmful events despite the fact I was charged with preventing them. We had become accustomed to doing our work in certain ways, and in part due to confidentiality and peer review statutes, we didn’t actively seek out the input of patients and families. The irony of not including patients in patient safety didn’t strike me until I was provided the opportunity to work directly with patients and families at the Minnesota Alliance for Patient Safety (MAPS), a nonprofit dedicated to safe care everywhere. After experiencing the overwhelmingly positive difference they make, projects are not started unless patients are on the team.  

Patient and family engagement, when designed meaningfully, brings new perspectives to organizational decision-making. Appropriate for all sectors, it incorporates the expertise and experience of our communities in our designs to produce the best possible, and in our case, safest outcomes. Co-design demonstrates investment in our systems, clinicians, staff, and our patients. True partnership with those we serve pays dividends. Through a variety of our research projects, we’ve found that simply having patients and families in the room changes the conversation. Team members are more thoughtful, willing to explore hard questions, and a common goal of safe care is prioritized.  

Inclusion is especially important on the heels of a serious safety event. Patients are oftentimes swept behind the scenes, and their stories go with them. Emerging research shows that we cause exponentially more harm with our traditional “deny and defend” risk management methods of responding to adverse events. The truth, which our industry needs more of, is that our patients and families are often not motivated by large sums of money in the face of an adverse event. They are driven by a desire to be a part of a solution and ensure similar events never affect another family again. 

We’ve had it wrong through the decades. Instead of tallying, analyzing, and trying to solve our own never events in isolation behind closed doors, we should have been including and listening to the families who experienced them, for they have insight that we can’t bring.

Through MAPS, I have come to believe:

  • Their stories have the power to leave everlasting impact.
  • Their conviction changes hearts and minds about what is most important.
  • Their passion inspires and carries weary teams forward.  
  • Their unwavering commitment holds us collectively accountable to improve.  

Our experience at MAPS has taught us that patients and families, particularly those who have been harmed within our healthcare systems, can be the most effective and compelling catalyst for change. Time and time again, we hear from patients that they are not interested in pursuing litigation or punishing or blaming those who have caused harm; rather, they want an authentic apology and the opportunity to help insure the error or event that caused harm to them or their loved one won’t happen again. On behalf of our board, providers and systems, regulators, and professional associations, we warmly welcome our patients and families to be part of the safety solution.

We believe patients and families are the fuel we need to fan the flames of continued improvement. Our next chapter in patient safety is to get out from behind the smoke and mirrors, overturn the rugs, and lift the veil from the aftermath of a medical error or adverse event—and invite patients and families in. Our patients and families hold incredible wisdom, lived experience, and insight to bring fresh perspectives to our systems that desperately could benefit from an “outsiders” perspective.

Invite them in. Allow them a place at the table. There is incredible power if we’d only be brave and humble and ask our patients and families to help us. We need them.

Minnesota Alliance for Patient Safety

The Minnesota Alliance for Patient Safety (MAPS), a 501(c) (3) nonprofit organization, has a 20-year history of patient safety engagement and accomplishment. As the only organization in Minnesota focused solely on safety improvement in health care, MAPS works to achieve safe care everywhere by engaging a diverse stakeholder coalition that broadly represents Minnesota’s health care community. MAPS is a subsidiary of Stratis Health. Together, we drive a common vision to advance safety across the care continuum, with special emphasis on elevating the voice of the patients for safety in all settings of care.

MAPS’ hosts a signature biennial safety conference. This year’s conference is April 30-May 1, 2020. Our 10th Biennial Conference “All In. Safer Together.” will provide valuable information for all care settings so that we will collaboratively accelerate safety improvement in Minnesota and beyond.  See our conference website here for the agenda and more details.

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