In the U.S., healthcare has been focused on improving quality across the industry—hospitals, health systems, clinics, even private practice offices. The typical process involves identifying an issue, taking stock of who is impacted, and then searching for the root cause to provide a sustainable solution (rather than a work-around that only tangentially addresses the quality issue). In searching for the root causes, many organizations rely on staff, researchers, and other “experts” to provide perspectives and information—but leave out patients and families.
When patients and families—the very people the healthcare system is designed to serve—are not an integral part of this process, healthcare organizations are operating without complete information. For quality issues and even for problem solving on other issues, having “fresh eyes” or a new perspective is a valuable asset. Patients and families see issues differently and can provide unique feedback—meaning that including patients and families in quality improvement efforts can help solve issues upstream before the problem makes it to the patient during care.
There are many opportunities and methods for including patients and families in quality improvement, above and beyond more traditional ways of collecting patient and family feedback through post visit surveys. Organizations can work with patients and families to both identify and solve problems, for example, by including them in root cause analyses or inviting them to serve as patient representatives on rapid improvement events. Quality and safety boards can add additional seats or roles for patients and families.
Organizations can also partner with patients on specific quality improvement initiatives. For example, if an organization has set a goal to improve patient experiences of care related to patient and doctor interactions, including patients and families in the interview and hiring process can help set expectations before the clinical interaction even occurs. Giving patients the opportunity to provide real-time input about their care on electronic tablets, or providing patients with easy access to their medical records can help surface issues and prevent errors.
Finally, organizations can develop an infrastructure that supports partnership and the continued infusion of the patient and family perspective. Patient advisor positions can be created to provide patients with the opportunity to advocate from within the organization. Volunteer or hired patient advisors can be recruited to speak with current patients and explain how they can provide feedback about their care. Organizations can also create patient and family advisory councils or positions within existing councils and committees to give patients and families a defined voice and consistent role.
Hospitals, healthcare systems, and clinics want high quality and low cost healthcare—but we can only improve so much if patients and families are not engaged in the process. The focus in healthcare should always be the patient, and the same goes for quality improvement efforts. When organizations look into all aspects of their enterprise (from hiring, data collection, care redesign, and organizational leadership to the patient admission processes or even housekeeping), they are certain to find places where patient voices can lead to improvements. Organizations, we all hope, strive for perfect quality scores—and, in the search for the root causes behind less than perfect quality scores, patients and families are a critical source of information and ideas.
The American Institutes for Research in partnership with the Gordon and Betty Moore Foundation have developed a comprehensive roadmap for patient and family engagement that addresses what all stakeholders can do right now to start engaging patients and families, including in quality improvement initiatives. The roadmap serves as a guide to those beginning to engage patients, as a refresher to organizations that have already started engaging patients and families, and as a resource that provides additional perspectives about actions that all stakeholders can take.