The voices of patient harm

They’ve Lived Through Patient Harm. Here’s Their Advice

We asked the patients and family members who responded to our patient harm questionnaire to tell us what one piece of advice they’d give to others, in light of their own experience. Here’s what they said.

If you’re a patient or loved one interested in being matched with a reporter, please complete our patient harm survey and answer, “yes,” to sharing your story with the ProPublica Reporting Network.

Be an advocate, and have an advocate with you

Make sure you have a friend or family member who can speak for you when you go to an appointment or are in the hospital, patients said. Veronica, who said her mother died in a medical facility due to negligent care, said patients should have an advocate with them, and that they should question things that go against their instincts. “You have a right to disagree with anything that doesn’t feel or seem right,” Veronica said. “Get other opinions.”

Ask questions about everything, said Kathy, who said she lost her father to a hospital-acquired infection. Know your own health status, medicines, and conditions, so you can ask meaningful questions at provider visits. Expect and even demand high quality care, but not more than you need, she said.

Many patients said it’s important to say something if you are having symptoms that aren’t being taken seriously. Patients often said their symptoms were not immediately addressed. Carol said she was in bad shape five days after her operation, but it took an additional three days for the surgeon to check on her.

Emily, who said she lost her career because of the harm she suffered, said speaking out can lead to change. “Don’t let people tell you that you can’t change the system because you can,” she said.

Related resources:

• The National Institutes of Health has published a guide on how to talk to your doctor.
• The Agency for health care Research and Quality also recommends questions patients should ask their doctor.
• The Informed Patient Institute helps patients determine which online resources are the most credible.
• The Empowered Patient Coalition created the website engagedpatients.org to empower patients to take greater control of their own health care.
• The Consumers Union Safe Patient Project coordinates patient safety advocacy efforts across the country.

Do your homework

Emily suggests patients investigate their surgeons before operations. Experts recommend finding out how often a surgeon has performed the procedure, and their complication rates. Patients can also read reviews posted by other patients online, and look up the doctor on the state medical board’s website to see if he or she has been disciplined. ProPublica’s Surgeon Scorecard is a good place to start. It has surgeon complication rates for certain elective procedures.

Not all surgeons are equal. Lorraine said her parathyroid surgery resulted in multiple errors that damaged her nerves and vocal cords. The procedure has a low complication rate with an experienced surgeon, she said, but the risks are far higher with an inexperienced surgeon. “Search for the most qualified surgeon, even if it means you need to travel to find the right surgeon,” she said.

Related resources:

• ProPublica’s Surgeon Scorecard publishes the complication rates for about 16,000 surgeons who perform eight elective operations.
• This ProPublica guide shows how to investigate whether a doctor has been disciplined.
• ProPublica’s Dollars for Docs shows how much money individual physicians are being paid by pharmaceutical companies.
• ProPublica’s Treatment Tracker shows what type of care individual doctors provide to Medicare patients.

Get a second opinion

It took three years for Tony to discover that a biopsy that showed he had cancer was incorrect. “Always get a second opinion, especially a pathology report,” he said. “If your condition offers you the option to slow down your decision-making process, do it…Do not take anything lightly.”

Lea, who said she suffered an overdose of the drug Accutane, recommended reading up on any drug that’s been prescribed. “Doctors make mistakes,” she said.

Related resources:

• The Centers for Disease Control and Prevention has published 10 tips to help patients stay safe.
• The National Library of Medicine sponsors the DailyMed website to help patients research their drugs.
• The website RxISK allows patients to research and report on drug side effects.
• The Choosing Wisely campaign may help patients avoid unnecessary treatment.
• The PubMed website provides quick access to medical research.

Be attentive to what’s happening

After a hip replacement operation, Jacqueline’s father suffered a hospital-acquired infection that she believes contributed to his death. She said patients should insist that people wash their hands when they come into a patient’s room.

Karen Curtiss, who founded the advocacy organization Campaign Zero after her father and husband suffered patient harm, created a detailed workbook to help patients and their families to monitor their care. Curtiss echoes Jacqueline’s hand-washing advice and also encourages patients to take thorough notes.

“When the doctors and nurses come in, if you’re prepared with your questions in notes, then you use your time wisely,” Curtiss said. “People respect stuff that’s written down. And if the doctors and nurses know you’re on it, they will be more accountable. It’s very subtle, but it takes the drama and emotion out of it, and makes the experience more businesslike.”

Related resources:

• Campaign Zero's Families for Patient Safety.
• The Institute for Safe Medication Practices sponsors the website ConsumerMedSafety.org to help patients avoid mistakes when taking medications.

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. Have you been harmed in a medical facility? Share your story.

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.