New research from the Betsy Lehman Center provides rich insight about long-term impacts, including emotional and physical distress, financial setbacks and health care aversion, felt by patients and families who have experienced medical harm. 

Findings include:

• Medical errors happen to people in all age groups, income brackets, and regions of the state.
• In the aftermath, many suffer long-lasting physical, emotional, behavioral and financial impacts.
• Individuals report loss of trust in the health system and some avoid not only the clinicians and facilities involved in the error, but health care entirely.
• Two-thirds expressed dissatisfaction with how their health care providers communicated with them after the errors.
• An important and promising finding is that in instances where providers exhibited greater open communication, patients report less emotional harm and health care avoidance.

“This study adds a critical piece of epidemiology. We’re putting some numbers to the story. That adds some urgency,” said Sigall Bell, M.D., OpenNotes Director of Patient Safety and Discovery at Beth Israel Deaconess Medical Center in Boston. “We can begin to feel those impacts and understand what they mean to our patients.”

Bell joined members of the Betsy Lehman Center team to present and discuss the results of the research findings — based on a survey of Massachusetts households — to a standing-room-only audience at the Institute for Healthcare Improvement (IHI) Patient Safety Congress in May. 

The study began with a random-sample survey of 5,000 Massachusetts households that included questions about whether a household or close family member had experienced a medical error in the prior five years. Nearly 1,000 respondents said “yes” and 253 of them agreed to answer a 30-question follow-up telephone survey a year later. 

The in-depth follow-up survey covered effects of the incident and what communication, if any, respondents had had with providers afterward. It also included 10 open-ended questions inviting narrative answers about the respondents’ experience. 

Patients and families are reliable reporters

Addressing a question she’s often asked regarding the study, Julia Prentice, the Center’s Director of Research and Analysis, said studies (here and here) consistently show that patients and families are reliable observers of medical error. They can provide a comprehensive view of care and usually can tell when “something isn’t right.” The report notes they are often reluctant to speak up about errors during care because they fear they won’t be taken seriously or simply feel uncomfortable questioning clinicians.

The interviews conducted with patients and family members demonstrate long-lasting physical and emotional harm from medical errors, which may be mitigated if they are approached openly by care team members with information and discussion about the incident. However, one-third of the follow-up survey respondents had received no acknowledgment whatsoever.

Photo credit: Tomas Ramos Photographers, courtesy of Institute for Healthcare Improvement

Bell observed to the IHI audience that “just when patients need us the most, we’re turning away.” Referring to the positive effect of open communication, she added, “This is also uplifting because we can do something about this now.”

Linda Kenney, the Center’s Director of Peer Support Programs admitted that for her, the study results are bittersweet. She has personal experience of the effects described in the study and has worked for close to 20 years to support patients, families and clinicians who are living with the effects of medical harm. “I have been saying this over and over, for a long time. Now we finally have the data. This validates what patients and families have been saying for years.”  

Kenney also reminded the audience about Betsy Lehman, the Boston Globe reporter for whom Massachusetts’ patient safety center is named. Lehman, who died from a massive overdose of chemotherapy in 1994, “kept trying to tell people that something was wrong. Something didn’t feel right, and nobody listened," Kenney said. "They told her, ‘Don’t worry.’”