The voices of patient harm

What We Learned from the ProPublica Patient Harm Questionnaire

Patient safety is one of the most talked about topics in medicine today, but it’s rare to hear from patients who have been injured. Now, ProPublica has gathered more than 1,000 stories of patient harm, from all 50 states, as reported by patients or their loved ones. Their experiences – summarized here – add an important dimension to the patient safety debate, particularly when it comes to the neglect and abandonment many feel from a system that is supposed to be caring. Patients and their loved ones say they aren’t getting straight answers about what happened. They claim medical providers are not apologizing or accepting responsibility. Most of all, they assert that no one is being held accountable for the harm.

What types of harm occurred?

Patient harm encompasses a broad spectrum of experiences. Patient stories included surgical complications, medication errors and neglect.

Source: Includes 1,627 unique harm types reported by 1,010 people in response to the question, "What types of harm occurred?"

What were the outcomes of harm?

Most of the harm described by patients was severe: either death or permanent disability.

Source: As reported by 1,052 people in response to the question, "Type of admission." Excludes incomplete submissions.

Did the medical providers acknowledge the harm?

Many patients described feeling victimized a second time by the way they were treated after experiencing harm. After placing trust in caregivers, they were surprised to encounter stonewalling, denial and blame. Only 1 in 10 people who completed the questionnaire said the hospital or other facility voluntarily acknowledged the harm. About the same proportion said the harm was acknowledged under pressure. Nearly all the rest said they were ignored or the harm was denied.

Patients expect transparency from doctors and nurses, but they often didn’t experience it. Only 13 percent said individual caregivers voluntarily disclosed the harm.

Source: As reported by 1,010 people in response to the questions, "Did the medical facility acknowledge the harm?" and "Did the medical providers responsible acknowledge the harm?" Excludes incomplete submissions.

Did the medical providers apologize?

Patients and experts often say it’s not enough to merely acknowledge harm – there should be an apology. But apologies were rare in our questionnaire, with just 13 percent saying they received one.

Source: As reported by 1,003 people in response to the question, "Did the patient and/or the patient's family receive an apology?" Excludes incomplete submissions.

Did the medical providers face any consequences?

Research shows the medical oversight system is fragmented and largely ineffective. Only 1 in 20 patients in the questionnaire believed their hospital or doctor faced consequences for the harm.

Source: As reported by 1,007 people in response to the question, "Did the medical facility suffer any consequences for the harm it caused the patient?" and 995 people in response to the question, "Did the medical provider (doctor, nurse, etc) suffer any consequences? " Excludes incomplete submissions.

Where did the harm occur?

Patient harm can occur in any health care setting, but most of the reported harm in our data occurred in a hospital.

Source: As reported by 1,010 people in response to the question, "Type of facility"

What types of admissions resulted in the harm?

Elective care is often considered safer than emergency or urgent care because patients tend to be in more stable health. More than half of the harm reported via our questionnaire involved elective cases. This tracks with ProPublica’s findings in our Surgeon Scorecard analysis, which showed that errors and harm can and do occur even in straightforward cases.

Source: As reported by 1,010 people in response to the question, "Type of admission." Excludes incomplete submissions.

How did patient harm impact their lives?

These stories are excerpted from patient and family members who responded to our patient harm questionnaire. They have not been independently verified. They have been lightly edited for brevity and clarity.

About this data. These results represent the self-reported experiences of 1,010 people who say they or their loved ones were the victims of patient harm, collected via a detailed questionnaire. Because respondents are self-selected, instead of being randomly sampled, their responses are not necessarily representative of patients overall. Despite not being scientific, the questionnaire results do show that a lack of transparency about patient safety is widespread. Special thanks go to the Consumers Union Safe Patient Project, the Empowered Patient Coalition, the ProPublica Patient Safety Facebook group and Vox for their efforts sharing our survey.