Among the more active members of our Facebook group on patient safety, Veronica James stands out.

She joined soon after we started the group in May and shared the story of her mother, who suffered a bedsore and had her breathing tube accidentally dislodged in a long-term acute-care hospital. James believes poor care contributed to her 90-year-old mother's death.

James uploaded the complaints she had filed with regulators, as well as their responses validating some of her concerns. She urged others to sign a petition against gag orders that medical providers sometimes negotiate when settling with patients who have been harmed. And she's posted dozens of comments, asking questions and offering advice and encouragement to others in the group.

James, an actress from Paramus, N.J., said she's found the Facebook group to be invaluable. "It gives a voice to patients who have been silenced for too long," she said.

Not everyone in the ProPublica Patient Harm Facebook Community has been as energetic as James. But the group — among our efforts to use social media in the service of journalism — has grown into a robust forum for discussion and learning for participants and reporters alike.

Our goal was to reach out and open a dialogue with patients who've been harmed while undergoing medical care. It's a major problem affecting more than 1 million patients a year, and although the health care system has moved to address the issue, results have been slow in coming.

We've also invited participation from doctors, nurses and other medical providers, many of whom have contributed comments and shared expertise. As of now, we're up to over 2,000 members in the Facebook group. 

Because many of the group's members, or their loved ones, have been harmed while undergoing medical care, the discussions cover sensitive topics and are often passionately delivered. (Some highlights are archived on ProPublica's patient safety page.)

James' mother, Vera Eliscu, died in August 2009, about seven months after being admitted to recover from pneumonia in a New Jersey long-term acute-care hospital. During her stay, her breathing tube was accidentally dislodged, which James said deprived her of oxygen for about 15 minutes, causing brain damage. Eliscu also did not receive appropriate care, regulators found, for a bedsore that developed into a large wound.

James said she signed, under protest, a gag clause as part of her settlement with the facility. Typically such clauses prevent a patient or patient's family from speaking out about harm they suffered. But James said she refuses to be bullied. She is now advocating for a law in New Jersey that would ban gag clauses. Her hopes were boosted when, on Dec. 17, another member of the Facebook group posted an article about a new law against gag clauses in California.

Patients who suffer harm face the same obstacles across the country, James said, and the Facebook group helps her keep tabs on what's happening elsewhere.

Anyone who's followed the Facebook group knows we promote our Patient Harm Questionnaire, which allows us to track patient stories in a more detailed manner. So far, we've had 264 people complete the survey. Although the sample is self-selected, the responses have been provocative:

  • The medical facility or provider responsible for the harm only disclosed it voluntarily in about one in 10 cases.
  • Only one out of 10 patients received an apology for the harm they suffered.
  • Some said they spent tens of thousands of dollars on bills related to the harm they suffered.

We've used some of the findings to inform our articles. And with the consent of respondents, we've also shared some survey results with other journalists and with academics who want to conduct research for publication in medical journals.

Medical providers are invited to complete the ProPublica Provider Questionnaire. We've had 53 respond so far, including 16 doctors, 13 nurses and a smattering of administrators, case managers, techs and more. They are sharing story ideas and issues of concern, and we plan to turn to them for expert advice as we investigate patient safety issues in 2014.