As if Facebook didn't grab enough headlines on Wall Street this week, the social media forum is also making healthcare news that should prompt any leader to pay close attention.
ProPublica, the two-time Pulitzer Prize–winning newsroom that collaborates with other media outlets for investigative journalism, a few days ago launched its Facebook "Patient Harm Community."
People can sign up and post a healthcare horror story in graphic detail. Journalists are joining to find patients in their communities who have details to share. There's a special "Files" page entitled "What to do if you've been harmed," which instructs patients on where and how to lodge complaints about doctors, nurses, and hospitals. Even some healthcare providers are weighing in.
ProPublica's Marshall Allen, who uncovered systemic poor quality in Nevada hospitals for a 2010 series in the Las Vegas Sun called Do No Harm, and himself a Pulitzer finalist, explains what prompted the Facebook venture.
For starters, he says, the one million people—a staggering number—who suffer injuries, infections, and errors in healthcare facilities across the country each year had very few places to turn for advice, until now.
"Over the years, I've talked to scores of patients who have been harmed while undergoing medical care, and the one thing that always struck me is the fact they feel so alone," he says.
"When they suffer this type of harm, they complain to doctors and hospital officials and regulators, but they often don't feel that they're being listened to.
"I wanted to find a way to give these folks an opportunity to talk to one another, offer advice, encouragement, and comfort, and get questions answered. A lot of them are at different stages of the process of working through the things that happened to them."
Healthcare professionals especially should pay attention to what's said on this site, he says, because it might illuminate what a patient with a bad episode of care really goes through. They should join in the conversation.
"I think for hospital leaders this would be a great place for them to put an ear to the ground, to hear what patients are really saying, and factor that in when they make decisions," Allen says. "We created this for doctors, nurses, hospitals, and healthcare officials just as much as it was created for patients."
"Doctors, nurses, and hospital officials also are very interested in reducing the number of patients who suffer infections, injuries, and errors while undergoing medical care," he adds.
Leah Binder, CEO of the Leapfrog Group, which plans to publish patient safety scores for 2,600 hospitals on its website in a few weeks, says ProPublica's patient safety community "is a great idea ... so people who suffer this kind of harm don't think they're the only ones."
"All too often I will hear from someone, 'I had the most unusual experience; I got an infection in a hospital' or 'someone gave the wrong medication.' But that's not unusual; that's usual," Binder says. "Most people who have been in a hospital have suffered some kind of harm and it's time to put a stop to that. People deserve to know that some hospitals are safer than others."
She notes that the Office of Inspector General at the U.S. Department of Health and Human Services counted up the number of deaths to Medicare beneficiaries caused by medical mistakes for one month. The extrapolated one-year total was 180,000. That makes for a lot of bereaved and frustrated family members.
By my count, membership in the fledgling Patient Harm Community is growing by about 100 a day as word gets out.
In recent days, for example, postings included these issues:
- A nurse in Phoenix claimed she was fired by her hospital, and now faces nursing board charges, for informing a patient about risks of upcoming surgery and the benefits of hospice.
- An infection prevention nurse in California, formerly a hospital inspector with the state Department of Public Health, told of undergoing a spinal disc procedure with a flawed protein material she was never informed about by her surgeon, resulting in multiple subsequent surgeries.
- A warning from an employee at the federal Agency for Healthcare Research and Quality for patients to not take antibiotics and proton pump inhibitors (like Prilosec or Prevacid) at the same time because of links to clostridium difficile infections.
Allen says ProPublica's social media experts looked around the country to find a similar online forum but without success.
This isn't like Yelp or Angie's List, where unhappy patients can anonymously pile on about a rude receptionist. "These are peoples' real identities, as far as we can tell, so if they say something to the group, their name is behind it. There's a little bit more accountability," Allen says.
It occurs to me that hospitals and doctors might be nervous about the page, fearing a free-for-all of complaints from emotional patients and family members who exaggerate claims or confuse the natural course of illness and disease with preventable misdiagnoses, infections, and medication mishaps. I see both sides, and appreciate the very human ways that can happen when people are in distress.
So I asked the American Hospital Association to take a look, noting that ProPublica wants providers to join the conversation.
Nancy Foster, AHA vice president of quality and patient safety, gives a tepid response:
"When patients have concerns about their care, we encourage them to talk with staff at the hospital. Patients and their family members will find that their care givers are deeply concerned about making care right for them and that care givers also want to improve the care experience for future patients.
"Further, it is often helpful for patients to share their stories in forums like this one. However, as providers, we are both legally and ethically bound to honor our patients' privacy and not discuss their care in open public forums."
The American Medical Association did not respond to a request for comment.
Robert Wachter, MD, a patient safety expert at the University of California in San Francisco and chief of the Division of Hospital Medicine at UCSF Medical Center, thinks the site could be useful for healthcare officials. "One learns about medical mistakes through a variety of lenses, and this is another one," he says. "I suspect there'll be some interesting, useful information, a fair amount of ranting, and lots of people with painful stories they simply want to share with others. It'll be interesting to see how it plays out and whether it gets any traction."
ProPublica's team members monitor discussions and comment, posting relevant news or reference articles. As the site gets going, Allen says, "We want to do keynote question-and-answer sections with healthcare leaders and patient advocates, and whatever the topics are that audiences are most interested in, we'll try to provide useful resources."
I wondered how Allen's team will handle comments specific to named hospital facilities or physicians. "Let's say someone posts 'St. Augustine Hospital in Kansas City, MO killed my father when it gave him an overdose of morphine?'" I asked.
He replies that ProPublica will try to seek comment, "and to the extent we become aware of something we know is not true, we will take it down."
Allen acknowledges that the Facebook effort "is kind of an experiment, to be honest. We don't know how it's going to go or what direction it's going to take. We're trying not to control it too much, but let the members participate and engage one another and direct the direction that things take."
I know people at ProPublica personally, and the excellent reputation it has garnered in the last four years. If anyone can do this in a responsible way, surely this organization can, and highlight at a human level the harm that negligence and nonchalance can cause.