by Marshall Allen ProPublica, Jan. 4, 2013, 9:50 a.m.
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 1,379 members in the Facebook group. Since May, 231 members have contributed more than 3,700 posts.
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 2013.
I encourage harmed patients & healthcare providers to "stalk" the ProPublica website. As British author Catherine Aird said "If you can't be a good example, then you'll just have to be a horrible warning." Accounts of patient harm reflect our culture and our humanity that will inform you so that you can avoid pitfalls and help others.. If we do not share them we cannot improve. Those who would quash this information are self-serving and short-sighted. Try as they may "they can't stop the beat"! Joleen Chambers Today 3:37pm
Brava Veronica. It is time for someone to speak up against gag orders. I have not experienced anything quite like this, but I feel your pain and wish that more of us have had the courage to take action against medical “accidents” like your mother’s. My husband died because a doctor refused to acknowledge that he had cancer, and I myself, against the doctor’s orders, drove him from Washington DC to Boston to a famous clinic where they immediately diagnosed lung cancer which had already metastasized. With affection and admiration. Arlene Sterne
I worked as an EMT for more than a decade. Nursing homes are the perfect example of malpractice. Understaffed and with nurses who don’t have any idea of what they are doing. It’s scary to see patients with 2 liters O2 on a non-rebreather mask, patients with nasal canulas fed by empty tanks, patients in positions that provoke choking, nurses calling EMS because respiratory levels are live threatening due to the fact that they are clueless how to suction a tracheostomy tube, patients completely high due to excessive medication. Failing to notice signs of stroke. Every place we went, they tried to cover up what happened and everything happened 15 minutes ago or during someone else shift. Then we go to the state website and see these places getting positive rankings. Its so bad we used to call this places “dumpsters”, and the general opinion was they don’t really care because there are more people on the waiting list, so they will never lose money. It’s sad the situation this patients are forced to endure.