w00t! National Physicians Alliance October 19 & 20 in DC

2013 National Conference  FiDA highlight

MARK YOUR CALENDARS for the NPA 8th Annual Conference, Washington DC — OCT 19 & 20, 2013

“Leading the Way:  Courage & Innovation in Patient-Centered Reform”

Plan to join NPA Members and friends from across the country in Washington DC to share energy, inspiration, and knowledge!

Keynote Address
Courage from the House of Medicine

Otis Webb Brawley, MD, Chief Medical Officer and Executive Vice President of the American Cancer Society

National Grand Rounds
Challenging the Selling of Sickness:
A partnership model for a new social health movement

Leonore Tiefer, PhD, clinical psychologist and author of Sex is Not a Natural Act (Boulder: Westview Press, 2nd edition, 2004)

and Kim Witczak, marketing consultant and patient advocate who became involved in pharmaceutical drug safety issues after the 2003 death of her husband as a result of an undisclosed drug side effect.  In 2008 she was appointed to the FDA’s Psychopharmacologic Drugs Advisory Committee as a Patient Representative.

2 special training sessions
with one of DC’s premier media teams:
KNP Communications

The Art of Persuasion

This core training has been provided to hundreds of Senators, Congressional Representatives, CEOs, and leaders of nonprofit and government organizations.
This session covers:

• strategies for connecting with various audiences
• an interactive overview of nonverbal cues
• the uses of story
• techniques for compelling Q+A sessions

Effective Messaging for Preventing Gun Violence

This training will cover messaging guidance on gun violence prevention that has helped to frame the public debate on this issue since the Newtown tragedy.  Key themes include:

• the personal toll of gun violence
• the right to be free from violence in our daily lives
• the changing nature of military-style weapons
• and effective responses to common attacks on issues such as the 2nd Amendment

Additional sessions will include:

• Quality, Affordable, High Value Care Systems
• Policy Making in Federal Agencies
• Choosing Wisely:  Making It Happen
• Skill building sessions:  How to do a radio interview and a Hill visit
• Innovators’ Forum – a place to share your ideas
• And more… Reserve your seat today!

–>REGISTER HERE!<–

Plan to join us in Washington DC, October 19-21, 2013

Stay over Monday, Oct 21, to join NPA members on Capitol Hill
and meet with your congressional representatives.

_______________________________________________________________

Conference Location

20 F Street NW Conference Center

A Facility Owned and Managed by the American College of Surgeons
20 F Street, NW (near Union Station), Washington, DC,  20001
Directions -  Area Map

Hotel & Travel

NPA has reserved a limited number of hotel rooms at a special conference rate of $169/night plus tax at the Washington Court Hotel, 525 New Jersey Avenue NW, Washington DC 20001 (near Union Station)

Reservations must be made directly with  the hotel at
(202) 628.2100 or (800) 321.3010
*Be sure to specify that you are reserving as part of the National Physicians Alliance group.

Deadline for reservations at the conference rate is
Friday, September 20.

_______________________________________________________________

Submit a Poster!

Are you doing exciting new research, implementing quality improvement, building a local network, or advocating for an important issue in your state or nationally?  Your NPA colleagues want to learn about it!  Submit your work to our 2nd annual poster presentation at the NPA 8th Annual Meeting, October 19-20, 2013 in Washington DC.  Click here for details.

_______________________________________________________________

Contact Becky Martin, NPA Project Manager, if you have questions or need additional assistance, becky.martin@npalliance.net or call 202/420-7896

U.S. Patient Advocates: Ben Goldacre is here!

Some talks in the US and Canada. COME!

January 30th, 2013 by Ben Goldacre in bad science | No Comments »

Bad Pharma is out in the US and Canada on 5th Feb, which is extremely good news (sorry about the delay, floods and hurricanes apparently..). I’ll be doing a few public lectures in various places, alongside media stuff and other things, there’s a list of open ones below.

If you’re a US podcaster or blogger and you want to chat about bad behaviour in the pharma industry then do please email the three of us (Brian.Gittis@fsgbooks.comben@badscience.net zross@unitedagents.co.uk).

Also: in the UK I’ve done a gazillion talks, and the most fun things always come from random people. So if from the list below it looks like I’m passing through your town and you want me to do a talk in your university, a pub, or an event, or you think there’s someone I should meet, a campaigner, an academic, a journalist, then please contact jglover@randomhouse.com for Canada, and Brian.Gittis@fsgbooks.com for the US. Do also cc me, ben@badscience.net, and we’ll try to fit it in around the various bits of other work while I’m out there.

Cheers!

You can buy the US edition of Bad Pharma here.

PORTLAND, OR
Sun 17th Feb 7:30pm
Powell’s Bookstore, 1005 West Burnside.
Talk, Q&A, and signing

www.powells.com/locations/powells-city-of-books/

SEATTLE, WA
Mon 18th Feb 7:30pm
Town Hall, downstairs, enter on Seneca Street
Talk, Q&A, and signing:

townhallseattle.org/ben-goldacre-how-drug-companies-mislead-doctors-harm-patients/

NEW YORK CITY, NY
Thurs 21st Feb 7:00pm
Talk, Q&A, and signing
NYC Skeptics at University Settlement, 184 Eldridge Street

nycskeptics.org/events/rationally-speaking-podcast-live-with-guest-ben-goldacre.html

TORONTO, CANADA
Friday, 15th Feb, 7:30pm
Massey College lecture, free and open to the public.

www.masseycollege.ca

Ben Goldacre: Debunker!

http://nyti.ms/XePMa8

Health Care’s Trick Coin

By BEN GOLDACRE   FiDA highlight

NEW YORK TIMES       OP-ED CONTRIBUTOR

Published: February 1, 2013

           

            THIS month, Johnson & Johnson is facing more than 10,000 lawsuits over an artificial hip that has been recalled because of a 40 percent failure rate within five years. Mistakes happen in medicine, but internal documents showed that executives had known of flaws with the device for some time, but had failed to make them public.

It would be nice to imagine that this kind of behavior is exceptional, but in reality, the entire evidence base for medicine has been undermined by a casual lack of transparency. Sometimes this is through a failure to report concerns raised by doctors and internal analyses, as was the case with Johnson & Johnson. More commonly, it involves the suppression of clinical trial results, especially when they show a drug is no good. These problems would be bad enough on their own, but they are compounded by a generation of “fake fixes” that have delivered false reassurance, and so prevent realistic public discussion.

The best evidence shows that half of all the clinical trials ever conducted and completed on the treatments in use today have never been published in academic journals. Trials with positive or flattering results, unsurprisingly, are about twice as likely to be published — and this is true for both academic research and industry studies.

If I toss a coin, but hide the result every time it comes up tails, it looks as if I always throw heads. You wouldn’t tolerate that if we were choosing who should go first in a game of pocket billiards, but in medicine, it’s accepted as the norm. In the worst case, we can be misled into believing that ineffective treatments are worth using; more commonly we are misled about the relative merits of competing treatments, exposing patients to inferior ones.

This problem has been documented for three decades, and many in the industry now claim it has been fixed. But every intervention has been full of loopholes, none has been competently implemented and, lastly, with no routine public audit, flaws have taken years to emerge.

The Food and Drug Administration Amendments Act of 2007 is the most widely cited fix. It required that new clinical trials conducted in the United States post summaries of their results at clinicaltrials.gov within a year of completion, or face a fine of $10,000 a day. But in 2012, the British Medical Journal published the first open audit of the process, which found that four out of five trials covered by the legislation had ignored the reporting requirements. Amazingly, no fine has yet been levied.

An earlier fake fix dates from 2005, when the International Committee of Medical Journal Editors made an announcement: their members would never again publish any clinical trial unless its existence had been declared on a publicly accessible registry before the trial began. The reasoning was simple: if everyone registered their trials at the beginning, we could easily spot which results were withheld; and since everyone wants to publish in prominent academic journals, these editors had the perfect carrot. Once again, everyone assumed the problem had been fixed.

But four years later we discovered, in a paper from The Journal of the American Medical Association, that the editors had broken their promise: more than half of all trials published in leading journals still weren’t properly registered, and a quarter weren’t registered at all.

Even if these fixes had been successful, we would still be decades away from knowing the full truth about our medical treatments, because today’s decisions are informed by the trials of the past, on drugs that were first researched and approved in 2007, 2002, 1998 and earlier. None of the reforms has even tried to ensure public access for these results, and so they remain buried in dry storage archives, deep underground.

All of these problems are perhaps best illustrated by the case of Tamiflu, which governments have spent billions of dollars stockpiling, in the belief that the drug will reduce the rate of complications from influenza. But roughly half the trial results have never been published, and researchers trying to obtain the full Clinical Study Reports have been stonewalled by the manufacturer, Roche.

This cannot be acceptable. Withholding data not only misleads doctors and patients; it’s an insult to the patients who have participated in clinical trials, believing that they were helping to improve medical knowledge.

Medicine routinely overcomes enormous technical challenges, and there is nothing complicated about the changes needed to prevent Johnson & Johnson, or Roche — or anybody — from withholding information. The F.D.A. has proposed reforms to its systems for assessing artificial hips. And a campaign, supported by the National Physicians Alliance, has begun at alltrials.net demanding that results be publicly reported for all trials, dating back to at least the 1990s, on all treatments currently in use. We need competent legislation, enforcement and leadership from medical academic bodies, all clearly stating that nonpublication of trial results is nothing less than research misconduct.

This will take place against a clamor from industry stakeholders. They have worked hard to silence discussion on these problems, by pretending that the flaws have already been fixed. Why? Because this strategy is their only hope. There is no defense for withholding information on treatments used by patients around the world.

Ben Goldacre, a doctor, is the author of “Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients.” @bengoldacre  (Twitter)

A version of this op-ed appeared in print on February 2, 2013, on page A23 of the New York edition with the headline: Health Care’s Trick Coin.

http://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe.html

Speakers Ben Goldacre: Debunker

Ben Goldacre unpicks dodgy scientific claims made by scaremongering journalists, dubious government reports, pharmaceutical corporations, PR companies and quacks.

Why you should listen to him:

"It was the MMR story that finally made me crack," begins the Bad Science manifesto, referring to the sensationalized -- and now-refuted -- link between vaccines and autism. With that sentence Ben Goldacre fired the starting shot of a crusade waged from the pages of The Guardian from 2003 to 2011, on an addicitve Twitter feed, and in bestselling books, including Bad Science and his latest, Bad Pharma, which puts the $600 billion global pharmaceutical industry under the microscope. What he reveals is a fascinating, terrifying mess. 

Goldacre was trained in medicine at Oxford and London, and works as an academic in epidemiology. Helped along by this inexhaustible supply of material, he also travels the speaking circuit, promoting skepticism and nerdish curiosity with fire, wit, fast delivery and a lovable kind of exasperation. (He might even convince you that real science, sober reporting and reason are going to win in the end.)

As he writes, "If you're a journalist who misrepresents science for the sake of a headline, a politician more interested in spin than evidence, or an advertiser who loves pictures of molecules in little white coats, then beware: your days are numbered."

Read an excerpt of Bad Pharma >>

"There aren't many out-and-out good eggs in British journalism but Ben Goldacre is one of them."

Ed Lake, The Daily Telegraph

Quotes by Ben Goldacre

            ““Real science is all about critically appraising the evidence for somebody else’s position.”
” Watch this talk »

            ““The placebo effect is one of the most fascinating things in the whole of medicine. It’s not just about taking a pill, and your performance and your pain getting better. It’s about our beliefs and expectations. It’s about the cultural meaning of a treatment.”
” Watch this talk »

            ““Positive findings are around twice as likely to be published as negative findings. This is a cancer at the core of evidence-based medicine.”
” Watch this talk »

                        ““[In science,] we only hear about the flukes and about the freaks.””

http://www.ted.com/talks/ben_goldacre_battling_bad_science.html

National Physicians Alliance: 'Un-Branded' Doctors

http://npalliance.org/press/press-releases/modest-means-modest/

Health Care For All, MASSPIRG, AARP Massachusetts, National PhysiciansAlliance, American Medical Student Association And Community Catalyst Urge DPHTo Protect Patients, Amend Drug Marketing Regulations And Conform To Law

Press Release: October 19, 2012

Leading consumer, health care, senior and community advocates voiced strong opposition to emergency regulations weakening the state’s prescription and medical device marketing law at today’s Department of Public Health hearing.

The regulations implement a law passed last summer to relax state restrictions on meals provided by pharmaceutical and medical device companies to doctors and other prescribers. Under the previous law, meals may not be provided unless in a clinical setting. The amended statute permits “modest meals and refreshments” to be offered at educational programs outside of a health care setting, such as a restaurant.

Representatives of numerous advocacy groups testified in favor of improving the emergency regulations. The rules ignored the legislative direction to limit permitted meals to those considered modest, and instead defined “modest” as “similar to what a health care practitioner might purchase when dining at his or her own expense.”

“We urge the Department to comply with the directive given in the amended statute and define ‘modest meals and refreshments’ in clear, concrete and enforceable terms. Alcohol should be expressly prohibited, as alcohol is contraindicated for educating doctors about drugs and treatments that affect their patients’ health,” said Amy Whitcomb Slemmer, Executive Director of Health Care For All. “If the proposed regulations are not significantly strengthened, we will inevitably go back to the days of pharmaceutical and device sales representatives inappropriately wining and dining our doctors.”

“The bottom line is that drug companies wine and dine doctors and other prescribers to sell their newest, most profitable brand name drugs, not to provide unbiased academic information on medical care,” testified Deirdre Cummings, MASSPIRG’s legislative director. “While the whole practice ought to be eliminated, at the very least, the regulations should accurately reflect the law. Free meals provided by the drug industry to physicians must truly be modest, and in an environment conducive to learning.”

“We urge DPH to establish a concrete monetary limit to define the term ‘modest,’ and we felt strongly that these meals should exclude alcohol. Instead, the proposed regulations have no monetary restriction, and permit the provision of alcohol,” Cummings added

“The medical profession prides itself on putting patients first. By not setting a clear dollar limit in its definition of ‘modest meals and refreshments,’ the Department of Public Health compromises our profession’s integrity,” said David Tian, a fourth-year Harvard Medical School student and national chair of the American Medical Student Association (AMSA) PharmFree campaign. “Patients deserve to know that their doctors’ prescribing choices are determined by the best scientific evidence, not which company promised the fanciest meal to lure prescribers into a one-sided presentation.”

As a result of the new regulations, drug companies are currently free to ply doctors with lavish multi-course meals and drinks, paid for by pharmaceutical industry marketing budgets, and ultimately tacked on to the price of prescriptions.

“AARP believes relationships between drug companies and doctors should be transparent and free from conflicts of interest,” said Jessica Costantino, advocacy director of AARP Massachusetts, which serves more than 800,000 members age 50 and older in the commonwealth. “The decision by the Public Health Council to approve regulations that further weaken the state’s Prescription Drug Gift Ban Law, ultimately puts the best interest of patients at risk.”

“Massachusetts is in danger of plummeting below its former place as a national leader in protecting patients from pharma marketing practices that interfere with trust between patients and their health care providers. The regulations also ignore the intent of the legislature by scrapping required disclosures to the state of industry payments to nurse practitioners and physicians assistants, which will not be required under the new federal transparency law that covers physicians.” says Marcia Hams, Director of Prescription Access and Quality at Community Catalyst. “These prescribers are increasingly the target of industry marketing now that they are critical to meeting primary care needs in the state.”

“I just want the best for my patients, and protecting the patient-physician relationship should be the focus of industry-oriented legislation, which the current gift ban regulations fail to do”, said Dr. Constance Liu, OB/Gyn department at Boston Medical Center and Boston leader of the National Physicians Alliance.

Following the hearing, the Department of Public Health plans to review testimony and issue permanent rules in November.

http://npalliance.org/wp-content/uploads/NPA_2012_Current_Program1.pdf

agenda November 11, 2012

NPA Annual Conference 

National Physicians Alliance

From Wikipedia, the free encyclopedia

National Physicians Alliance
Motto	Service, Integrity and Advocacy
Formation	2005
Type	501c(3)
Headquarters	Washington DC
Location	United States
Membership	20,000 physicians
President	Valerie Arkoosh, MD, MPH
Key people	Jean Silver-Isenstadt, MD, PhD
Website	npalliance.org

The National Physicians Alliance (NPA) is a national, multi-specialty medical organization founded in 2005 by former leaders of the American Medical Student Association. The organization's mission statement reads: "The National Physicians Alliance creates research and education programs that promote active engagement of physicians with their communities to achieve high quality, affordable health care for all. The NPA offers a professional home to physicians across medical specialties who share a commitment to professional integrity and health justice."

The NPA was founded as an alternative to traditional trade associations that operate in a guild tradition, primarily serving the economic interests of physicians rather than advocating first and foremost on behalf of patients and public health. The NPA does not accept funding from pharmaceutical or medical device companies.

A 501c(3) organization based in Washington DC, the NPA has a membership of approximately 20,000 physicians. Members must have graduated with an MD or DO degree from a professional school accredited by the LCME or the AOA-COCA; or hold a license to practice medicine within the United States.

Tutorial: Mayo Scholarship voting

Please vote daily until August 4, 2012. Heres how:

Your three action items are in RED.  You must go to the Mayo website (live link provided!) to vote-this is just a tutorial on this page.

Joleen C. – Scholarship Contest Essay

Posted on July 16, 2012 by Randy Schwarz

Editor’s Note:  Joleen C. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook “Like” or Twitter “Tweet” buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.

Login, “Like” Twitter & Post:  When the Medical Device Safety Act is passed by Congress and the Charter of the FDA is amended to include voting Patient Representatives on the medical device panel (as in pharmaceuticals), social media will be able to claim a large part of the victory.

Four years ago I began handling phone, mail and other correspondence for a family member who experienced early failure of a joint replacement implant.  Internet research revealed the medical and legal purgatory of thousands of joint replacement implant patients.  Navigating the medical system (for a disabled person prescribed maximum dose painkiller and living 1,000 miles apart) is challenging but not uncommon situation for many caregivers, I learned.  Because the root of the problem was intractable (poor federal public policy) my role transitioned to unpaid full-time advocate. I applied and was selected in September 2010 to attend the FDA Patient Representative workshop, which expanded my advocacy to all patients with failed implanted medical devices.

My stated goal is to help patients with failed devices access the medical care that they require and to work toward the conclusions of the Institute of Medicine’s 7/29/2011 report. It advised the FDA to restrict the use of FDA 510(k) approvals for implanted devices and provide a post-market UDI national registry that would be accessible to patients and their medical providers.

This quest prompted me to join with a number of effective advocacy organizations such as The Society for Preventative Medicine, Consumers Union and SpeakerLink.  I created a blog (http://fida-advocate.blogspot.com) and regularly participate on FaceBook, Twitter (@JjrkCh) and LinkedIn.  I have testified twice at FDA/CDRH Town Hall meetings and have traveled from my home in Dallas, TX to Minnesota, Washington, DC -4 times-, San Francisco, CA, Irving & San Antonio & Austin, TX in my role as advocate.  Recently, financial limitations prevented me from attending Regina Holliday’s The Walking Gallery and the HDI Forum in Washington, D.C. (both with registration complete) so I participated virtually on a webinar.

In my work toward the goal of safer and more effective implant devices I would value and benefit from discussions with trained social media professionals and other advocates.  I wish to elevate my advocacy skills and clarity of purpose so that I capably  represent the patients who have been harmed and are often unable to travel or spare time/money for this endeavor.  Exposure to new ideas/attitudes would refresh and enhance my implementation of more targeted social media communications.  My advocacy includes educating the public, the device industry, administrators and legislators about federal public policy and legislative changes that would strengthen patient safety and reduce patient harm.

I appreciate that Mayo Social Media has many qualified applicants for these three scholarships.  Thank you for your consideration and this valued opportunity to communicate via social media!  – Joleen Chambers

Select TWEET button.   Select 'LIKE' button.

Read to the bottom of all comments and leave your COMMENT and press POST COMMENT.

(I am now ranked at #5 and I must be #3 to be selected.  It is very possible with your help and the help of your followers!   Thank you so much!)

Please vote daily until August 4, 2012.   

http://socialmedia.mayoclinic.org/2012/07/16/joleen-c-scholarship-contest-essay/

Please power my advocacy!

Your vote is very valuable to me.   All it takes is a daily quick positive comment and clicks on the “like” and/or “tweet” button at the bottom of my essay page.

Three winners will have travel and costs covered to attend the 4th annual Mayo Clinic Social Media Summit October 15-19, 2012 in Rochester, MN 

Registration costs $1200 (not including travel/lodging/meals) so most patients/caregivers and patient advocates cannot afford to attend.

Contest ends August 4, 2012.

Thank you!

http://socialmedia.mayoclinic.org/2012/07/16/joleen-c-scholarship-contest-essay/    

Fodder for TV: The Good Wife highlights failed medical device trial

LINK

Sit down with a glass of wine and experience the medical and legal purgatory of the harmed patient.  This one has a Hollywood ending . . .  The Good Wife  "Get A Room" Season 3 Episode 3

http://www.cbs.com/shows/the_good_wife/video/2149721418/the-good-wife-get-a-room

Health Leaders Media encourages patient harm dialogue

New Facebook Page Gathers Stories of Medical Harm

Cheryl Clark, for HealthLeaders Media , May 24, 2012  (FiDA Blog Bold)

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.

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Cheryl Clark is a senior editor and California correspondent for HealthLeaders Media Online. She can be reached at cclark@healthleadersmedia.com. Follow Cheryl Clark on Twitter.

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