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Hospital leaders are realizing that in the push to improve patient safety and quality of care, some valuable input is being overlooked. Patients and family members have not been involved in any formal way at most hospitals, and there is now reason to think that should change.
Patients and family have been absent from patient safety efforts mostly as an oversight rather than a deliberate effort to exclude them, says Jeffrey Brady, MD, MPH, rear admiral in the U.S. Public Health Service and director of the Agency for Healthcare Research and Quality’s (AHRQ’s) Center for Quality Improvement and Patient Safety. Healthcare leaders naturally focused on clinicians and other healthcare professionals because they are familiar with safety issues, and assumed laymen would not be able to contribute much.
“We’ve found that that really is not the case, that patients and family members have an insight that contributes significantly to improving patient safety,” Brady says. “They are closer than anyone else to the care of the patient, so they have knowledge of symptoms, treatments, and oversights that may be different from what the clinician observes, or may add information to a known safety issue.”
Patient and family input is an important component of patient safety efforts because some safety concerns would not be detected otherwise, Brady says. That is particularly true with outpatient services because there usually is less surveillance in that setting, he notes. Even when a patient safety issue already is known by the healthcare provider, patient input can add details that aid the analysis.
“It’s not that we expect all the reports from patients and family members to be news to the healthcare provider, something that they were completely unaware of,” Brady says. “Often, it’s going to be information that supplements what you’re already doing to address a safety issue. It may be a perspective you had not considered, or it could contribute to your understanding of how widespread the issue is.”
AHRQ addressed the issue in its Health Care Safety Hotline project, designed to actively involve patients and their families in reporting patient safety issues. The hotline allows patients, family members, and caregivers to report patient safety problems, including errors and adverse events, on a secure website or by calling a toll-free phone number. A recent AHRQ report explains how they sought the patient perspective and what the experience means for hospitals with the same goal. (The report is available online at: http://bit.ly/2dtVhqs.)
The report notes the perspective of patients and families has been documented in the past.
“In an early study, Weingart and colleagues found that 8% of inpatients reported adverse events, and 4% experienced ‘near misses.’ Importantly, none of these events were documented in the hospital’s adverse event reporting systems,” the report says. “In the largest study of its kind, Weissman and colleagues compared patient reports with medical records and found that 23% of the study patients had at least one adverse event detected by interview, and 11% had at least one adverse event identified by medical record review. Two-thirds of the adverse events were detected by patient interview alone, demonstrating that patients could identify adverse events of which the hospital was unaware.” (See below for the studies referenced.)
A hotline was theorized to be the best way to collect information from patients and family. Previous research was based on interviewing patients and noting whether they reported safety concerns as part of their healthcare experience, a method that yielded some valuable information but which was considered too cumbersome and time-consuming to employ on a large scale, Brady explains.
“Establishing a hotline and encouraging people to report their safety concerns is a more proactive and patient-centered method for getting to this information,” Brady says. “Rather than having a small subset of patients interviewed, this approach opens the reporting system to any patient or family member with a concern. The hotline, and the information promoting it at the hospitals, sent the message that we respect your input and we want to hear your concerns.”
When the pilot project launched in February 2014, the researchers and participating hospitals promoted the availability of the hotline with posters throughout the facilities and brochures available in lobbies and at registration desks. In addition, 4-by-9-inch cards placed throughout the hospital and provided to individuals on admission. folded business cards,
AHRQ researchers recognized several challenges from the start, Brady says. One concern was that patients and family would respond too much and burden the staff with reports that were not significant or valid patient safety issues. Closely related was the concern that patients and family members would not have the clinical or patient safety background to understand safety issues, which could result in both underreporting and overreporting.
AHRQ tested the system in two hospitals for 15 months with mixed results. Patients and family members did not report as many issues as expected on 37 reports during the pilot project. Projects on a smaller scale also have yielded low participation rates. (See the story in this issue about a hospital’s attempt to get more patient and family input.)
Nevertheless, Brady says the researchers found those reports did provide information that might otherwise have been overlooked.
About 25% of the reports cited involved communication issues, consistent with how clinicians know that is a primary cause of patient safety failures. Other reports cited safety concerns with the healthcare environment, care coordination, process or documentation issues, and problems when being discharged. Twenty-three of the 37 reports affected the patient, as opposed to an observed condition that did not affect the patient. Examples of the reported issues included mistakes involving a prescription drug or a test, errors in diagnosis or advice from a clinician, and poor cleanliness or hygiene.
Nearly half of the issues cited in the reports resulted in harm, with the harm categorized as mild according to the scale for grading harm that is a component of the AHRQ Common Formats, used to standardize reporting of patient safety events.
During the two-year run of the pilot program, the AHRQ researchers modified some details of the hotline website to clarify and standardize some terms and also improve the overall appearance. The researchers also added a request for permission to share the reporter’s name with the relevant healthcare organization, and they increased the number of words that could be used in the narrative text box. (See the story in this issue for lessons learned during the project.)
The pilot project supported the idea of including patients and family in safety efforts, Brady says.
“Some of the concerns from the beginning of the project were shown to be not as significant as feared, particularly the idea that including patients and family in this proactive way would result in a number of reports that overburdened staff but produced no valuable information,” Brady says. “We found that patients and family members actually reported less than expected, and what they did report was legitimate and useful for improving patient safety.”
Author Greg Freeman, Managing Editor Jill Drachenberg, Associate Managing Editor Dana Spector, and Consulting Editor Patrice Spath report no consultant, stockholder, speaker’s bureau, research, or other financial relationships with companies having ties to this field of study.