Results Summary

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Hospital leaders and doctors—not patients and their families—usually decide what types of care are regarded as safe and high quality. But what do patients and their families think safe, high-quality care looks like?

To learn more about the views of these healthcare customers, researchers are focusing on what happens when patients do not get the care they expect. Hospitals call these nonroutine events. Examples include a patient getting the wrong drug or a patient waiting hours to receive discharge papers.

By studying these examples, researchers can learn about what patients want most from their hospital care. Knowing what patients want can help experts measure the quality and safety of patient care in a way that matches what patients and their families say is most important.

Project Purpose

The research team wanted to

  • Identify what patients and families view as nonroutine in their hospital experience
  • Understand how patients, families, and healthcare providers decide whether to report nonroutine events to researchers
  • Figure out whether collecting information on nonroutine events can help hospitals understand how their care processes fail to work like they should

Methods

The study included four types of hospital patients:

  • 144 adults having planned surgery who stayed in the hospital for less than 24 hours
  • 129 adults getting treatment for a heart problem
  • 93 children with cancer who were getting chemotherapy
  • 84 children having planned heart surgery

The research team interviewed these patients, their families, and their healthcare providers. To perform the interviews, the research team made 559 hospital visits.

The research team asked participants, family members, and healthcare providers to describe times when the hospital care they received was not what they expected. The team also asked for information about each participant’s background, such as gender and age.

The research team made a list that described each of the events that participants talked about, and then medical experts reviewed the list. They didn’t know the names of the patients or healthcare providers involved. The experts labeled each event by type, how serious it was, and what could have caused it. They also noted whether the event caused the patient any physical or mental harm.

Findings

Adults having a planned surgery. Among the healthcare providers of patients in this group, 57 percent reported a nonroutine event compared with 40 percent of patients and families. Only about 25 percent of patients reported an event that their healthcare provider also reported.

Among healthcare providers, nurse anesthetists reported a nonroutine event most often (66 percent of their cases). Doctors who were training to be anesthesiologists reported a nonroutine event least often (33 percent of their cases).

The most common nonroutine events reported by patients were problems with diagnosis or treatment. For example, they talked about times when the healthcare provider wasn’t familiar with them as a patient, when a mistake happened, when the patient had to wait a long time for a diagnosis, or when a healthcare provider gave the patient the wrong diagnosis. Patients also reported problems communicating with their provider, like

  • Getting wrong information
  • Getting too much or too little information
  • Getting information at the wrong time

Healthcare providers were more likely to report problems with how they gave care to patients. For example, healthcare providers reported times when patients got care they did not expect, when patients could not get care they needed, when patients had to wait a long time to get treatment, or when the care was interrupted or not consistent.

Adults getting treatment for a heart problem. In this group, 69 percent of patients reported a nonroutine event compared with only 46 percent of healthcare providers. The most common nonroutine events reported by patients were times when they had an unexpected delay in their care. They also talked about times when the treatment they got was different from what they expected.

Children getting cancer treatment. In this group, 32 percent of parents and 20 percent of healthcare providers reported a nonroutine event.

Children getting heart surgery. In this group, 68 percent of healthcare providers reported a nonroutine event compared with 37 percent of parents.

The research team reports that experts and patients are still reviewing the nonroutine events for children with cancer and those getting heart surgery to see what types of events their families and providers reported.

Conclusions

For patients and families, there were many times when their care was not what they expected.

Patients and families often reported different types of nonroutine events than healthcare providers. Healthcare providers also did not know about many of the events that were most important to patients and families.

Patients and families gave information that may help hospitals do a better job of caring for their patients.

Sharing the results

The research team is writing articles for journals about the results of the study.

More to Explore...

Dissemination Activities

Through limited competition, PCORI awarded 25 of the 50 Pilot Projects up to $50,000 to support dissemination and implementation of their activities and findings through the PCORI Pilot Project Learning Network (PPPLN) funding. The deliverables listed below are a result of convenings and conferences supported by this funding, whose efforts align with the PCORI strategic goal of disseminating information and encouraging adoption of PCORI-funded research results.

Project Lead: Shilo Anders
Period: September 2015 to March 2016
Budget: $48,488

Developed a proof-of-concept patient-centered interactive webiste that enables patients/families to enter their own non-routine events (NREs) and explore a database of previously entered NREs.

Project Information

Matthew B. Weinger, MS, MD
Vanderbilt University
$698,398
Patient-Centered Non-Routine Events to Identify Risks to Best Patient Outcomes

Key Dates

June 2012
June 2015
2012
2015

Study Registration Information

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Last updated: March 4, 2022