Editor’s note: In addition to Susan Edgman-Levitan, this post is also coauthored by Tejal Gandhi. 

Recently, the National Patient Safety Foundation’s Lucian Leape Institute brought together 40 patient safety experts — health professionals, patients, advocates, and others — to develop recommendations for how best to engage patients and families in improving patient safety. They represented patient advocacy organizations, health systems, professional societies, researchers, and international safety organizations.

During the course of two lengthy roundtable discussions, participants were asked to reflect on an experience in which they or someone close to them had experienced harm at the hands of the health care system and how they responded. Among the stories we heard:

“It began with fluid in my left elbow bursa — bursitis….Within two weeks, the swelling was intense and painful…I was given the choice between continued wait/watch or aspiration. The potential for infection was discussed along with the promise of ‘great sterile technique’ if I decided to proceed. During the process to prepare for the joint aspiration, I noticed a number of breaks in sterile technique. It occurred to me to speak up before the needle pierced skin, but [working in the same organization and having] knowledge of this physician’s bad behavior with patients made me keep silent. Days later, the elbow was red, the bursa area amazingly swollen and hard.”

“My late husband suffered a severe brain stem injury in an automobile accident….Comatose, he was transported to a major medical center and admitted to the neurosurgery ICU. Two nights later, I was told that he needed surgery, not for his traumatic brain injury, but because there was a blood clot in his arm. The chief neurosurgeon explained that an arterial catheter had been placed by mistake in the wrong arm….After several surgeries and massive doses of heparin, it became clear that he had developed a systemic allergy to heparin. As a result of this cascade of errors, his right arm was amputated just below the elbow….I had noticed my husband’s hand was very cold during the day and told the nurse, who reassured me that she would put on an extra blanket. She didn’t take my observation seriously. I did not realize that I had to speak up very loudly to be heard.”

“The birth of my first baby resulted in a C-section after a long labor…During the course of the surgery I could basically hear everything. I heard the obstetrician yelling at the anesthesiologist, I heard the notion that ‘these things only happen to staff.’ I heard the sex of the baby. Needless to say the experience was a little terrifying because I could hear everything but couldn’t move a muscle.”

When it comes to health care, consumers are often counseled to “just speak up.” These stories show that doing so in our current health care system is not always easy, even for experienced patients, advocates, and those working in the field.

Evidence is mounting in support of patient engagement as a vital component of safe health care, but that is often easier said than done. The Institute has set out to start the conversation and provide solutions.

Why Is This So Hard?

The barriers to patient engagement in our current system are wide and deep, but not insurmountable. At the consumer level, there is still a lack of understanding about what constitutes true engagement and what we mean by the term, “patient safety.”

There are health literacy challenges. There are gaps in the health care infrastructure for providing social and human services that can directly impact health outcomes. And our paternalistic model of care is so ingrained that, as the examples above show, even experienced patients and clinicians sometimes fail to speak up or ask questions for fear of being labeled as “difficult.”

Other barriers exist at the system level. We are only just beginning to try to fix our “non-system” of fragmented care. Dr. Lucian Leape, chairman of the NPSF Lucian Leape Institute, and his colleagues have written and lectured widely about the pervasiveness of the “culture of disrespect,” noting that if medical personnel cannot cooperate with each other, they are unlikely to willingly engage with patients and families. Existing workflows in medicine today result in compressed appointments and non-standard handoff processes that do not foster good communication or coordination of care. Our system also lacks the tools and training for health care professionals to be truly successful at educating and involving  patients and families in decision-making or self-management of chronic conditions.

Yet, we believe that getting beyond these barriers is not only possible, it is essential if we are to continue to make progress in patient safety. The report that resulted from the Institute’s roundtable sessions, Safety is Personal: Partnering with Patients and Families for the Safest Care, offers recommendations for leaders of health care organizations, health care clinicians and staff, health policy makers, and researchers.

What Can Providers, Organizations, And Policy Makers Do To Encourage True Patient Engagement On A Broad Scale?

Leaders of health care organizations can demonstrate their commitment to patient and family engagement by developing strong policies in this area. These include providing open access to clinical records and establishing open visitation policies in hospitals.

Patients and family members should be invited to participate in quality improvement activities, hospital and ambulatory quality and safety oversight committees, and to be represented on governing boards. Hospitals and large health systems can help educate the public about patient safety by partnering with advocacy groups, schools, and other community organizations to raise awareness about the importance of active participation by patients in health care.

Perhaps most important, leaders must commit the resources necessary to educate and train all personnel, so that everyone who has contact with patients understands their responsibility for fostering engagement.

On the front lines of care, clinicians and staff, having been sufficiently trained, can facilitate patient engagement by having conversations with patients about their goals, values, and preferences for care, and providing them with the information and support they need to manage their health conditions. Clinicians and staff will invite a patient’s questions until shared understanding is achieved every time. And they will conduct change of nursing shifts at the bedside so that patients and their families can contribute to the information sharing.

Including patients and families in quality improvement and in the design of care processes will give clinicians and staff important perspectives and spark ideas that may be wholly different from their own knowledge. And when things do go wrong, clinicians will be skilled at providing support and resources to patients.

It’s important to note that, in order for patient and family engagement to become the norm, leaders in health care, government, academia, and research must recognize it as a fundamental policy objective. Implementing and improving tools such as the Consumer Assessment of Healthcare Providers and Systems surveys and the Hospital and Medical Office Surveys of Patient Safety Culture will help provide insight into the links between patient experience, patient safety, and outcomes. We also believe new measures should be created to analyze areas such as diagnostic error, medication reconciliation, decision quality, and patient-reported outcomes.

Accordingly, patients should be represented on committees that set policies related to payment reform, accreditation, and other issues. Why? Because patients are the very individuals the health care system should be designed to protect from harm. The system exists to serve them, but it doesn’t serve them well if their voices are not heard.

The same can be said of the health care research agenda. Patient and family perspectives can enhance patient safety research by framing important topics and helping to define research questions and methods. Moreover their participation is essential if we are to increase our knowledge of effective decision making, improving communication, the relationship between patient experience and patient safety, and other critical areas of investigation.

How Would the Patient Examples Given Earlier Look in This Future Health Care System?

In the case of the patient too afraid to confront the physician with a “history of bad behavior,” the entire scenario would be different. To begin with, the leadership of that organization would have instituted policies around disruptive behavior, along with ways to report it and discipline violators. Even the most skilled — and lucrative — surgeons would be subject to discipline. At a break in sterile technique, the patient would feel empowered to speak up, and the physician would thank him or her for doing so.

The case of the nurse not taking the family member’s concern seriously enough might turn out differently in our future scenario, where communication is improved at all levels of care — between patient and caregivers, and within care teams. Even if the same result were to occur, the family would be included in an investigation and in the plans to prevent it from happening again. They would receive the necessary support to help them adjust to such a disabling event.

In the case of the patient who experienced awareness during childbirth anesthesia, speaking up was, of course, impossible. Better communication within the clinical team might not have been enough to avoid such a rare event. In our future health care system, however, this patient might be invited to serve on a quality and safety committee, a quality improvement initiative in labor and delivery, or to inform research into this issue to help prevent it from happening to another patient. Her story would matter.

Like those on our roundtable who shared their stories, we will all be patients some day. In a future health system, all of our stories should matter. Patients need to be partners in care; it’s too important to leave to the professionals.