Patient and Family Engagement

Patient and Family Reporting: New Knowledge, New Advances

In just a few weeks, at the National Patient Safety Foundation (NPSF) Patient Safety Congress in Orlando, we will learn which individual or organization is to receive this year’s Sherman Award for Excellence in Patient Engagement. The NPSF Lucian Leape Institute began its collaboration with Engagingpatients.org to confer this award in the wake of a report from the Institute that looked at the barriers to greater patient and family engagement and laid out recommendations for how to overcome them. Celebrating successes is important in the work we do, and hearing and reading stories of those who are making a difference in this area has been inspiring.

 

Patient and family engagement can take many forms, including adverse event reporting.

Patient and family engagement in healthcare can take many forms. What started as recognition that patients had the right to ask questions and participate in their care has grown into an expectation that consumers should be able to assist in designing the very processes by which care is delivered. We have seen over the years, on this blog and in other places, evidence that supports the idea that greater consumer engagement can lead to better outcomes and safer care.

Yet, we have a long way to go in engaging patients even at the most basic level—reporting preventable harm and speaking up about risks. Recent research has been yielding new knowledge about patient and family reporting of errors and adverse events, and the results are worth noting by clinicians and patients alike.

Consumer Reporting of Adverse Events: Catching a Missed Opportunity

Several years ago, a pilot project sponsored by the Agency for Healthcare Research and Quality tested a method for accepting consumer reports of patient safety incidents, yielding mixed results. Among the conclusions were that such a system is feasible, desirable, and can be instituted without interfering with other systems. A key point, however, was that passive outreach is not enough. We cannot simply build the systems and expect that patients and family members will know how to use them or feel empowered to do so.

A recent study used Family Safety Interviews to assess the frequency of safety events in four pediatric hospitals. The researchers concluded that family members often report events “not otherwise detected or documented,” including preventable adverse events. Over a seven-month period, 185 of 717 parents or caregivers interviewed reported 255 total incidents. Of these, the researchers classified almost 52% as safety concerns, with an ultimate result of 50 family-reported errors in care, 17 non-harmful medical errors, and 11 non-preventable adverse events.

This team’s methods included developing an interview instrument with the help of family advisors and experts in survey methodology, health literacy, and patient safety. Because families are often unfamiliar with the usual healthcare and safety terminology, the interview instrument included definitions and examples to guide family responses. Researchers classified the responses as potential errors or adverse events, non-safety related concerns, or other considerations.

This study points out that the usual methods of reporting—hospital incident reporting systems and the kind of surveillance used in research—exclude patients and families. In fact, some of the incidents reported by the family members were not otherwise reported by clinicians.

While this team went above and beyond in soliciting input from families, another recent study looked at unsolicited patient complaints and risk of complications after surgery. The study’s investigators asked, “Are patients at greater risk of postoperative complications if their surgeons have higher numbers of unsolicited patient complaints regarding disrespectful behavior?” The results showed that patients whose surgeons were associated with the highest numbers of complaints had almost 14% more postoperative complications when compared with patients seeing surgeons viewed as respectful.

According to one of the study’s authors, the results should remind us “how important it is to engage patients and families in our efforts to promote safe care.”

Although fundamentally different in nature, both of these recent studies hold lessons to those seeking to improve patient and family engagement. While one used a proactive, interview approach, the other used unsolicited reports to a proprietary reporting system (the Vanderbilt Patient Advocacy Reporting System). To me, one of the central lessons is that this work takes effort.

While the current research is encouraging, it helps to show that there is still plenty of work to be done to fully engage patients and families in pursuit of safer care.

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Tejal K. Gandhi, MD, MPH, CPPS Tejal K. Gandhi, MD, MPH, CPPS, is chief clinical and safety officer at the Institute for Healthcare Improvement (IHI). Previously, she was president and CEO of the National Patient Safety Foundation, which merged with IHI in May 2017. An internist and associate professor of medicine at Harvard Medical School, Gandhi was formerly the chief quality and safety officer at Partners Healthcare in Boston, Massachusetts. In 2009 she received the John M. Eisenberg Patient Safety and Quality Award for her contributions to understanding the epidemiology and possible prevention strategies for medical errors in the outpatient setting.

Tejal K. Gandhi, MD, MPH, CPPS has 8 post(s) at EngagingPatients.org

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