The digital revolution is blurring roles and boundaries, and changing the way we all work. Increasingly, there are examples of media innovation that could also been seen as a health intervention (and vice versa).
The recent Sydney Morning Herald initiative around drug law reform – which has involved both old-fashioned community engagement, via a public meeting, and online participation – is one such example (see #drugdilemma for some of the Twittersphere chat).
Another – and much more interesting – example of online media/health innovation is the launch this week by the US not-for-profit investigative outfit, ProPublica, of a Facebook community for patients been harmed by healthcare. It is also open to others concerned about this issue, including health professionals, regulators and service managers – and other journalists.
ProPublica says it wants this “experiment in social media” to build a community of people who are interested in discussing patient harm, its causes and solutions. They plan to post questions and answers with experts and provide links to the latest reports, research and policy proposals.
To ensure the community is “helpful and productive,” they ask participants to behave “as if at a dinner party with 10 of your closest friends and family members”; ie to not dominate the conversation, to treat others with respect and to think about how your personal experience can be helpful.
They say:
Our goal is to create a welcoming environment for everyone; you should never feel intimidated, embarrassed, or uneasy about what you or others choose to share here. ProPublica staff can moderate if there are problems – and we will – but the health of the community depends on the behaviour of the community itself.
The site also includes advice on what to do if you or one of yours has been harmed, citing Helen Haskell, founder of Mothers Against Medical Error, who recommends six action steps:
1. Get a copy of the patient’s records.
2. Make sure the incident is reported internally
3. If the patient has died, order a forensic autopsy, which includes toxicology tests
4. Consider calling an attorney
5. Meet with the doctor and hospital officials. How: The Assertive Patient has some great tips (http://www.assertivepatient.org/how.html)
6. Report the incident to regulators, who can investigate.
Journalists explain why they are involved in this project
Here is some of why two ProbPublica journalists who are moderating the site say they are involved.
Marshall Allen, @marshall_allen, has covered patient harm since 2006. While at the Las Vegas Sun, Marshall’s series, “Do No Harm: Hospital Care in Las Vegas,” won a Goldsmith Prize for Investigative Journalism and was a Pulitzer Prize finalist.
He says:
I’ve spoken to more than a hundred patients who’ve been harmed in medical facilities. They’ve been infected by deadly bacteria, punctured or lacerated during surgery, overdosed on drugs, suffered a wrong-site surgery, had items accidentally left in their bodies and more.
Many times I’m speaking to a family member because the patient is dead.
The same themes come up in these conversations: no one acknowledged the harm or apologized for it; it was impossible to get basic information about the incident; complaints were ignored or downplayed by doctors, hospital administrators and regulators; no one seems willing to ensure that others are protected; they feel isolated and alone. These harmed patients have virtually no voice.
That’s the genesis of this Facebook group. Patients – harmed or not – deserve to be heard as individuals, and together can have a collective voice. Also, those who suffered harm instead of healing are not alone.….
As a journalist, it’s my hope that the ideas and stories shared by members of this group can inform my perspective and my stories – and those of any other reporter who happens upon this forum.
Olga Pierce, @olgapierce, specializes in health policy, insurance issues and data journalism. She is a graduate of the Stabile Investigative Journalism Seminar at Columbia University and a finalist for the 2011 Livingston Awards.
Pierce describes how a woman called Nancy Garvin had a profound effect on her career. Nancy’s 24 year-old-son Robbie died in 2006 within hours of taking his first prescribed dose of methadone for severe back pain.
First Nancy was told her son committed suicide. Then they said her son was a drug abuser. But she insisted that he had taken the pills as prescribed. She wasn’t guessing, she had collected her son’s medical records and autopsy report and counted his pills.
Pierce writes:
It soon began to appear to me that she was right: Her son died taking his pain medication as prescribed.
At the time, methadone was being trumpeted as superior to other painkillers because it wasn’t nearly as fun to abuse. Insurance payment structures, public policies and medical literature were pushing the drug, downplaying its dangers…Though Robbie was new to methadone, he was prescribed a potentially lethal dose at the high end of the allowed range, and no one had warned him or his loved ones to be wary if he suddenly felt drowsy and wanted to lie down after taking the medication. …
I met Nancy in 2008 while working on a graduate school reporting project. I am sometimes described as a data journalist, and this became my first big data story. Ultimately I was able to use data to show what many suffering families already knew: zip-code by zip-code as methadone prescribing for pain spiked, so did methadone-related deaths. I also found that the top prescribers of methadone were family doctors – not pain specialists who were not trained to handle such a finicky medication.
Compounding the problem was the fact that medical textbooks and prescribing guides were faulty and advised a dosage range that could be deadly at its upper limits.
The story, which ended up on the front page of The New York Times, altered the course of my career. But it also taught me an important journalistic lesson: Listen to the folks who are being ignored. That’s what I hope to do here.
Beyond crowdsourcing for stories and sources
Adrienne LaFrance from the the Nieman Journalism Lab has reported on the ProPublica initiative as a way of trying to make crowdsourcing more meaningful – as something more than mining social media for sources.
By creating a group that exists away from ProPublica, the news organisation is facilitating a discussion that its reporters can tap into, but also one that participants can make their own. Allen calls it a form of service journalism, “not so much by putting them in touch with us, but more by putting them in touch with one another.”
LaFrance reports that the key to this project is seeing the Facebook group as complete in and of itself. If it takes on a life of its own, that’s okay by ProPublica. “It doesn’t need to be something else,” Allen said. “Our intent doesn’t have to be to mine it for sources.”
Meanwhile, a report by Cheryl Clark for HealthLeaders Media cites 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.
Binder 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.
The report also cites 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, who 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.”
Clark concludes:
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.
Something for Australia?
I wonder what Croakey readers think of this Facebook initiative? Would it be useful to develop something similar in Australia?
Clearly, the individuals or organisations that took on such a project would have to hold a fair level of trust from the wider community. Perhaps ProPublica – because of its history of transparent, collaborative processes – is better placed to take on such projects than more traditional media organisations?
I also wonder if a similar approach could be used to develop some of the suggestions for new online health publications recently pitched at Croakey..
