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Listening is Not Enough: A Patient Advocate Recommends System-Level Changes

Why It Matters

“Our [health care] system has been designed by politicians, by academia, by scientists, by technical experts, without major input from the patient community — and we are the receivers of care.”

When Sue Sheridan saw her newborn son Cal becoming increasingly lethargic and his skin turning orange, she knew something was wrong. After multiple health care professionals dismissed her concerns as the frivolous anxieties of a first-time mom, Cal suffered brain damage that a hospital culture with stronger patient safety systems and policies that valued patient and family voices could have prevented.

“Our [health care] system has been designed by politicians, by academia, by scientists, by technical experts, without major input from the patient community — and we are the receivers of care,” Sheridan told Institute for Healthcare Improvement (IHI) President and CEO Kedar Mate and IHI Senior Fellow and President Emeritus Don Berwick on a recent episode of the IHI Turn on the Lights podcast. “We embody so much knowledge to help transform our system that we would like to see at all levels,” she added. Sheridan is a Founding Member, Patients for Patient Safety US.

Sheridan’s heartbreaking stories of witnessing her son and husband suffer preventable harm due to medical errors are all too common. After her husband’s death, she started organizing patients and family members to change patient safety standards. She met many patient advocates who had experienced medical harm and had known something was wrong with their care, but medical professionals had brushed off their concerns. Observations and experiences like these have led Sheridan and others to champion efforts to democratize patient safety.

The democratization of patient safety, and of health care more broadly, calls for widespread development of policies and practices to make care safer, higher quality, and more equitable for patients. To do this, Sheridan advocated bringing in those who have experienced harm to teach the health care system about solutions to close these gaps.

As a Patients for Patient Safety US leader, Sheridan recommended system-level changes that could dramatically improve patient safety. The first is the establishment of an agency in charge of reducing patient harm at the national level. This would take time to assemble, but health systems can start putting Sheridan’s other recommendations into action now to protect their patients:

  • Co-design policies and procedures with patients and families. In the spirit of democratization, health systems should prioritize patient perspectives when creating care standards. The patient safety movement has had some success in telling stories of harm, but it is not enough just to listen to patients. Providers and health systems must work with their communities to improve policies and procedures, especially those harmed by their care.
  • Tell the truth when harm occurs. Providers should immediately notify patients when errors happen. They should include patients in the fact-finding process of determining what went wrong and subsequent development of solutions. Patients should also be notified when and to whom errors are reported by the care team.
  • Collect and publish data. Sheridan noted that no one knows the magnitude of harm of many conditions, including kernicterus, a type of brain damage that can result from elevated levels of bilirubin in a baby's blood. (Clinicians failed to diagnose Sheridan's son with kernicterus until he was 18 months old though he had its symptoms starting days after his birth.) To better understand the scale of harm, health systems should proactively collect data and ensure that it is available to the public for review and analysis.

Sheridan emphasized that large-scale and sustainable improvement will not happen by punishing individual clinicians when they make mistakes. She became committed to creating systems to minimize and, most importantly, prevent harm when she realized that those who treated her son and husband, “weren’t bad doctors. They could have been better doctors, but they weren’t bad people.” She added, “They made mistakes, but the system wasn’t there to catch the mistakes.”

Hope for the Future

Sue Sheridan has been a leader in the patient safety movement for over 20 years now, and she has seen the movement go through ups and downs. Still, her tenacity remains unwavering. “I am very optimistic. I will always be optimistic because I believe in human beings. I believe in humanity,” she said.

Sheridan also believes that creating a safer health care system requires collaboration from all of us. Democratizing patient safety means that everyone can and should play a part in improving our health care systems. She encourages organizations and individuals alike to join Patients for Patient Safety US to work together to create a world where “no one is harmed in health care and every patient receives safe and respectful care, every time, everywhere.”

Sophia Cunningham is an IHI Associate Project Manager.

You may also be interested in:

Banning Patients for Being “Unprofessional” Is a Safety Risk

Embedding Equity into Every Step of Adverse Event Analysis

National Action Plan to Advance Patient Safety