The voices of patient harm

More than 1,000 people have shared their patient harm stories with ProPublica. Many of them gave us their permission to share their stories with other journalists. We hope to encourage more coverage of patient harm by making these patients available to local journalists who want to tell their stories.

If you’re a patient or loved one interested in being matched with a reporter near you, please complete our patient harm questionnaire and answer, “yes,” to sharing your story with the ProPublica Reporting Network. What follows is a guide created by ProPublica reporters to help journalists who want to report on patient harm.

Reporting Recipe: How to Investigate Patient Harm

Finding stories

Many victims of medical errors are eager to share their story. They want to bring public attention to the issue so that other patients don’t suffer. To connect with patients, reporters can contact advocacy groups like the Consumers Union Safe Patient Project. They can also join the ProPublica Patient Safety Facebook group, or sign up below to be matched with sources in your region via ProPublica’s Reporting Network. There are also online communities where victims of medical harm are easy to reach.

Verifying the harm

It’s important to vet each patient’s case thoroughly. Here are some methods ProPublica uses.

Define the relationship. The reporter and the patient need to agree to the terms of their relationship. The two must cooperate, but the journalist is independent and needs to seek the truth by speaking to everyone involved in the story, including medical providers who may or may not have been responsible for the harm. The journalist must make his or her own assessment of what occurred, and may reach different conclusions than the patient on some points. Patients want their story to be credible so they generally understand the importance of a reporter taking an independent look.

Ask the patient to waive privacy rights. Medical providers are not allowed to speak to a reporter about a patient’s care because of the federal privacy law called the Health Insurance Portability and Protection Act, better known as HIPAA. Reporters should have the patient waive HIPAA privacy rights, for the limited purpose of a particular story, so that the medical providers are free to speak to the reporter about the care the patient received. Often waivers must be in writing. (Here’s an example.) Most patients who have been harmed understand and are willing to cooperate. If a patient were unwilling to waive HIPAA rights, it would usually disqualify them from a story because it would be difficult to independently verify the details of their cases.

Get the medical records. Patients have a legal right to their medical records and may have already obtained them. Review all the relevant medical records to see what they show about what happened to the patient. If the patient doesn’t have records, have them request them. Be aware that the records patients receive may not be complete. It’s often necessary to have a medical expert review records to help interpret them.

Did any official agency investigate what happened? Find out if anyone complained about the harm the patient suffered to a state licensing agency, a medical board, or some other type of oversight agency. These complaints may lead to independent investigations that turn up important details. Lawsuits can provide valuable information, but they may include partial or incomplete information, as both sides may be more focused on winning than revealing truth. If no complaint was filed, or not lawsuit was filed, that does not mean the case isn’t legitimate. Most patients do not formally complain and most cannot find an attorney to represent them in a lawsuit.

Ask independent experts to review the case. Journalists usually can’t make clinical judgments about whether something went wrong with a patient’s care. Independent doctors, nurses or other medical experts can bring their expertise to bear, however. Fortunately, many experts have a public service mindset and are willing to help if asked. Be aware as you are talking to medical providers that their standard of whether something went wrong may be based on whether a case involved obvious negligence. Sometimes patients are harmed because of negligence. Sometimes they are harmed because care could have been better, a different standard. A case doesn’t have to include negligence to be considered patient harm. You may have to call attention to this difference to get experts to consider the events from the perspective of the patient.

Reach out to the providers involved. Call and email all the relevant doctors and other medical providers who cared for the patient. Contact the medical facilities where the harm took place. Visit in person, if possible. Tell them the patient has waived her HIPAA privacy rights and that you understand the importance of getting their perspective and explanation — so you can fully understand the entire story and be fair. Then, listen to their perspective and make sure to include it in the story. The goal is to clearly explain the story and what it will contain and give them an opportunity to share their perspective and any important context. Often, however, the medical providers will not speak to you for your story.

Bulletproof your story. During the reporting process, invite experts and the medical providers involved to disprove the allegation that the patient was harmed or that the harm should have been prevented. Carefully consider their evidence and arguments.

Be willing to pull the plug. Sometimes the facts are ambiguous or can’t be verified. That does not mean that what the patient saying is not true, but it might mean you can’t go with the story. In that case, the difficult decision must be made to kill a story — even after much work has gone into the reporting. In these cases, the patients can be deeply disappointed, and perhaps even frustrated with the reporter. It’s best to be honest and as considerate as possible.

The Voices of Patient Harm

The following patients have chosen to share their stories with journalists in ProPublica's Reporting Network. Browse below for potential sources available in your area or complete the signup form at the bottom of this page to be notified as we gather more stories near you. You can also email [email protected] to get a copy of the ProPublica Patient Harm Survey to publish on your own website.

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.