Journalism in the Public Interest

How You Can Help ProPublica Investigate Health Care Quality

Be part of the patient safety conversation, get regular updates and share stories or views.


(Sean Gallup, Getty Images)

Too many patients suffer harm instead of healing in U.S. medicine. That’s why ProPublica’s reporters have investigated everything from deadly dialysis centersand dangerous hospitals to the failure of state boards to discipline incompetent nurses.

As part of our ongoing reporting, we’ve created a page where readers and providers can be part of the patient safety conversation, get regular updates and share stories or views.

You’ll find a mix of highlights from ProPublica’s Patient Harm Facebook group, links to some of the best reporting on health care quality, analysis from ProPublica reporters and other journalists, interviews with experts and tools you can use to research health care providers.

We have a few broad goals. One is to help patients stay informed. But another is to create a constructive conversation about why patient harm persists, and what might be done to fix it. Perspectives from providers and patients will be key, and we encourage input from both sides.

We also hope that your participation will better inform the work we do. So on the page you’ll find several ways to engage with us:

  • A link to our Facebook group, where more than 2,000 people have joined a lively discussion about patient safety curated by ProPublica reporters Marshall Allen and Olga Pierce.
  • A questionnaire for patients who’ve suffered harm in a health care setting. We’re gathering these stories to help guide our research (responses are confidential unless the patient says otherwise).
  • Another questionnaire for physicians, nurses and other providers who are concerned about quality of care and who want to share their expert knowledge, views, stories or tips.

We hope you’ll take part. To find out more, follow reporters Marshall Allen and Olga Pierce on Twitter or email them at marshall.allen@propublica.organd

I would love to participate in a discussion of quality in healthcare, and as an RN with 40 years experience is a variety of areas feel that I could add to your discussions.  However, what little I have read so far in the harm sections and even the title of this article screams “witch hunt”.  I am sure there are many faults in the system as there are in journalism and investigation, however there can never be improvement or knowledge without a willingness to know all aspects of situations. There are always two sides to every situation and that just does not come across in your articles.

I agree with the other comment. I have never seen a situation without at least two sides. Health care has many highly dedicated individuals, professional and support staff who work very hard to provide the best care they can with resources that are dwindling quickly. The two main difficulties I, as a nurse practitioner see daily, is lack of expertise and /or recognition of symptoms by providers and the impact reimbursement structure that directly impact access to care. Two situations quickly come to mind. A woman admitted to a medical psychiatric unit who’s delirium went undetected for over 4 days, in part due to utilizing “permanent float” nurses, so the patient didn’t have any consistent staff who worked with her. A different RN for the majority of the shifts over those four days may have contribute to lack of recognition of the delirium. The second situation was lack of further medical/ neurological work up for newly found “cyst /benign tumor”  on a man’s brain due to some bizarre payment plan the hospital negotiated with the insurance company. Best I can describe it, the hospital was allowed a “day rate” only and MRI’s although indicated   be obtained because it would impact the hospital’s bottom line!

Marshall Allen

Sep. 18, 2012, 7:38 p.m.

Hi CLK and Deb Yacubian, thanks for your comments.

I understand you feel sensitive, and want to assure you that this is not any witch hunt. We merely take the stance that it’s impossible to tolerate the status quo in health care, which is an estimated hundreds of thousand of patients being harmed a year.

It’s providers like yourselves who inform our reporting. We hope that you will also contribute your thoughts as well by completing our provider questionnaire:

Cynthia Walker

Sep. 18, 2012, 8:26 p.m.

So…...maybe it comes down to ethics, humanitarian choices, and put the medical and pharmacuticals education system requirements back to include the humanities and common sense and IT to help this huge and life impacting profession. It’s often the conflict ,that we are all put in, that we need mediation and honest change….that was hard….

I agree with CLK and Deb - I’m an RN working in clinical systems healthcare IT. I’m a ProPublica fan and have been for a while but I don’t feel that I need to be ‘investigated’ because I chose to be a healthcare professional.

Arizona Eagletarian

Sep. 19, 2012, 1:04 a.m.

The other side of the story, the concern addressed by the two previous comments, is the responsibility of the PR machine employed by the health care institutions. Of course, one of the other functions of that PR machine is to inject doubt into any situation that would make things uncomfortable for the management of the institution.

There are a number of reasons why, and people who, someone may want to suppress any and all investigation into any aspect of medical error, patient safety/harm in America’s health care institutions.

As for me and my house, we want light to shine on any and every aspect of the systems and institutions so that risk of harm can be minimized.

Let the public relations people hand telling the other side.

Arizona Eagletarian

Sep. 19, 2012, 1:07 a.m.

Pardon my typos.

Let the public relations people HANDLE telling the other side.

And when I referred to the “two previous comments” I meant those by CLK and Deb Yacubian. I had not seen the other comments prior to posting mine.

All that has been written may be the truth; probably is the truth, but do we want a real constructive, effective and meaningful solution badly enough to honestly analyze the problem in its entirety and then do the hard work required to get politics out of medicine and health care once we see a true solution?
What drug companies, doctors, nurses, hospital staff and everyone in the health care industry does that causes harm is just the tip of the iceberg.  The air we breathe, the ground we grow our food in, the water we drink, the substances bombarding our bodies all day, everyday are, at best, not good for us and at worst are hazardous.
Then, when you consider what we do to ourselves with our eating habits and lifestyles, involuntarily or on purpose, there aren’t many life forms on earth that can claim robust health anymore.  To try to blame our deterioration or demise on the medical care professionals is just a witch hunt.  They have become easy targets because of the cost of everything medical has been inflated by misguided political interference in the market place.  It is a humongous problem, but since everyone is born with a body and with good luck, there are so many of us born with able bodies and sound minds, that we ought to not take for granted one minuscule iota about our health by taking a good inventory of our lives and realizing that the most valuable asset we will ever have is our good health.  The best way to enjoy good health and our lives is to take responsibility for the way we treat our bodies.  I know that is very hard today when life is so complicated and there are so many demands on our time and for most or all of the money that we earn.  But, that’s what I said in the beginning, IF we are willing to find the whole truth and then do what is really necessary . . . Up to a few years ago, I would have gladly taken my body to the doctor “for a tune up” and dropped it off while I went on to work, if that had been possible.  It was then that I realized how disconnected we are from our bodies and our health; that we have let the medical professionals make health care into practicing magic.  We don’t know much about how our bodies function or what they really need and we’re too busy, so we let them take care of us and write the check.  Their risk managers look at the figures and if only so many people out of so many more people are hurt or die from incidents of health care “mishaps,” then that is acceptable.  Well, who wants to be one of the casualties?  Some people are going to be, so who’s going to step up and volunteer for the “honor?”  Well, what’s the solution?
1.  Know for ourselves and teach children to recognize the value of good health from as early an age as possible,
2. By learning age appropriate knowledge of our bodies and having healthful practices reinforced throughout all grades in school we will become more capable of being responsible for our own health and it will become totally integrated into our daily lives for the rest of our lives.
3.  Everyone needs to know about their bodies no matter what career path they may choose for their adult life.  Time spent learning to take care of ones self and what a miracle (of a machine) our bodies are; especially if everyone is learning it, will change our attitude toward what’s truly important in life and we will make better decisions for ourselves personally as well as politically.
4.  It will be easier to rid our civilization of junk foods and hazardous substances.  Politicians and others won’t be able to lie to us about what’s “safe.”
5.  Medical costs will become reasonable, health insurance will return to a more rational cost, death and injury from health care industry professional malfeasance or drug company greed will be greatly diminished.
6.  We will be healthier, our children and all living things on this planet will be more healthy and sustaining.

No one, including those groups trying to make medical payment to providers dependent upon patient satisfaction, understands that the real danger in health care are those patients who get poor health care and think it’s quality care.  That is, I would estimate that as many as 25 percent of patients do not recognize poor health care when they receive it.  Then there are those who think they are getting poor health care when they are not. 

The whole issue of having patients rate the care they receive is highly flawed by personal opinion in either direction. I have read numerous anecdotes about lousy health care by irate patients, and in many cases, it’s not the care, but their perception of the care that is flawed.

This is not to in any way denigrate the efforts Pro Publica is making to collect patient stories and help educate patients about how to evaluate the care they receive, but the whole notion that the patient is always right, like the customer is always right, does not hold true in medical care.  Just as health care does not follow the business model so popular in the minds of those trying to reduce health care costs.

Without clear discernment as to what is being promoted by patient satisfaction studies, the process becomes, as some has expressed here, a witch hunt.

Diane, you do have to start somewhere.  And the fact that there is poor care at all means the process can’t start from within the system—heck, within the system, such an attempt to ferret out the dead weight is, as seen here, decried as a witch hunt.

Personally, in my industry (software), I’m not alone in hoping that we can find and eliminate the people doing more harm than good, even if it puts a few of us at risk.  It’d relieve us from having to solve a lot of problems that shouldn’t exist.

In a world where doctors are asking patients to sign a contract preventing them from posting reviews, their stories become more critical, sadly.

The key is to take advantage and contribute, rather than try to stifle it as some are doing.

Emi Kaneshiro

Sep. 19, 2012, 1:12 p.m.

I think safety is a fine thing to look at, the problem is there is no system of health.  there is no health systemThat is what we need to be looking at.  If we are going to sanction many systems: insurance system, provider system.  research system.  There has to be some interconnectedness that makes it work.  Right now we have an ever expanding bubble and dysfunction is the norm.

John, I agree you have to start somewhere. 

I simply think trying to uniformly base practitioner reimbursement on patient satisfaction demonstrates a very fundamental misunderstanding of patient conceptions about health care.

First, I don’t think reimbursement enters into their project.  ProPublica doesn’t appear to have authority over insurance regulation that I can see.

Regardless, though, for lack of a better way of phrasing things, Diane, “I feel your pain.”  Really, when you work on software, the happy people vanish into the woodwork and I only ever hear the loud complaints (and one suggestion of euthanization).  The general audience has also been…anti-educated in how computers should work, so trouble reports are almost always…idiotic isn’t the right word, because it implies their problem isn’t real, but they’ll demand horrible solutions to problems they don’t voice, making every fix a detective project.

So I do get it.  And I hope that’s not the end of this project, just like the list of bug reports isn’t the measure of a software project’s success.  For example, I was once told that my project needed a slider-ish control to change the font size of the screen’s form labels.  I had another guy tell me that his company’s (green) logo, an image he supplied, “wasn’t looking green enough.”  I think everybody understands that you need to read between the lines of any complaint and that it’s the patterns of complaints that are important.

(I also see a lot of possible value to the professionals.  If there’s a bunch of bogus complaints that Dr. No won’t give me my prescription sleeping pills, it’s probably obvious that a lot more patients can be helped by educating patients that it’s a last resort for a reason…and finding the “liberal” doctors and getting them out.)

I hope there’s a similar project on the professional side, a database of things doctors are sick of seeing/hearing.  I’ll take for granted that it wouldn’t be used to blacklist anybody from care, and I’m sure there are privacy issues involved (I had to review HIPAA when I worked at Eclipsys a million years ago, but I don’t remember much of it), but both databases would allow for a frank discussion that isn’t manipulated by the AMA, the insurance companies, the single-disease support groups, or the politicians.  That discussion isn’t happening now, though, and it really needs to.

Marshall Allen

Sep. 20, 2012, 9:26 a.m.

Hi John, thanks for your comments on our project. We are indeed compiling feedback from providers about this, as people can see from following the link that I posted above in this thread of comments.

We’ve already had people offering to help us who come from a variety of perspectives—attorneys who represent doctors, and those who sue doctors; physicians; nurses; case managers; etc.—and look forward to building that pool of sources much wider and deeper.

Thank you, John, for providing an example of precisely the kind of problems that can arise with patient satisfaction data.

Marshall Allen has indicated ProPublica has worked hard to procure a variety of perspectives, including physicians, and that provides a good balance.

My intent is not to discourage ProPublica from the good work it does. I would only ask that those involved in the collection and reporting of this information also give some consideration to how it might be misused.

Health care has a particularly nasty history of collecting data and then using it as a stick to beat health care providers into conforming to standards of care which may, but often are not, in the best interest of the patient.

The example I used of provider reimbursement being adjusted for patient satisfaction is just one of many.

So my concern, then, comes down to asking ProPublica to give some serious thought to how the data collected can be protected from abuse. Most particularly taking some small sound bite out of context and basing broad public policy upon that misrepresentation.

Generally, we are taught to think that data, good data, speaks for itself.  Put it out there and the truth will come.  Sometimes it does, but usually in the movies.

Unfortunately, especially in health care, history tells us otherwise.

I am not suggesting the data shouldn’t be collected, but only that how the data will be used needs to be carefully considered as well. Because to my knowledge there are no open discussions of these kinds of issues from practitioner perspectives which do not come with a price. And as John says, such discussions are sorely needed.

A culture guided by the commandment “If if bleeds, it leads” (journalism) needs a lot of discipline to assure perspective and proportionality in this endeavor. I’m interested in the filters you will use in deciding how to shape the information you collect.

Will you share your methods to search for root causes of any bad outcomes rather than leaping to any conclusions? Would you publish a list of the studies and sources of the disconfirming evidence (facts that question convenient, conventional wisdom) used to temper your thinking?

Specifically, can you list the methods you employ to avoid letting arm waving advocacy, political ideology, and heart wrenching emotionalism cloud this subject so we can get more clarity and better facts?

You don’t say how you define harm at the individual level.

Did the patient have to die or is losing the wrong leg sufficient? Does harm have to meet the legal definition of harm or be something you could win a lawsuit on? Is it limited to patients in hospitals? Does doctors falsifying patient records count?

Sometimes harm is the result of a lack of medical knowledge - there are very few diseases where everything that is known will hold up to future research or diseases where everything is known period. Harm sometimes stems from ignorance.

How you choose to define harm will shape the story you write as well as the ensuing discussion.

“Too many patients suffer harm instead of healing in U.S. medicine.”

- Healing is bad for the profit margin.

I am 55 years old and disabled. My physical disabilities are not curable. I have been poked and prodded and have undergone every test and treatment available. My quality of life is 0.

I have a wonderful and caring pain doctor. He cares. He has a contract, random urine testing and under NO CIRCUMSTANCE any early medication.  He still is being beaten down by the Board of Medicine.

When something was found in a random urine test, he had to cut the patient loose.  The patient then sued the doctor for “getting him hooked on meds”.

How does my doctor win?  He is not receiving money from drug companies. He is one of the true caring doctors that still practice medicine in the state of PA, because of the “witch hunts”.

So…where does that leave me now? Under treated for my pain. For 2 years I had no job or insurance. My disability came through and it was a fight to get everything pre-authorized. I had one (1) month of appropriate medication and then was told last month because of new rules I have to be cut back on one and totally off another. I had ONE MONTH of a semi-quality lifestyle.  I have had insomnia since I was 6 years old. It is not impossible for me to be awake 6 days in a row. I don’t dare to take too much medication to sleep, because I may fall. I live alone. However, now the only pain medication that makes it so I do not have to get out of bed at night or run upstairs to the bathroom 45-65 times a day has to be cut back because of regulations. I have lost the will to fight. I have been a chronic pain advocate for doctors and patients since I was 25 years old and I am tired and I hurt. I have nothing left to fight with.

Just one question. If a doctor has a contract with a patient, does random urine testing, no early scripts and I also know he has done pill counts…why should the doctor be held responsible for the patients behavior? Why should I be punished? Are doctors now also expected to be psychic?  I guess that was way more than one question, but what type of life am I expected to have now?

If you met my doctor, you would have no choice but to hang your head in shame at the treatment he is given by the Board of Medicine. Never has a more caring or kinder human being existed.  I expect soon he will have no choice, but to get out of PA. That will leave many of us with no option left.

Tomorrow I drive the 2 hours to see my doctor knowing I am going to be cut back further.  I doubt I will be sleeping anytime soon.

This article is part of an ongoing investigation:
Patient Safety

Patient Safety: Exploring Quality of Care in the U.S.

More than 1 million patients suffer harm each year while being treated in the U.S. health care system. Even more receive substandard care or costly overtreatment.

The Story So Far

Too many patients suffer harm instead of healing in U.S. medicine. That’s why ProPublica’s reporters have investigated everything from deadly dialysis centers and dangerous hospitals to the failure of state boards to discipline incompetent nurses.

This page allows patients, providers and readers to join the patient safety conversation. Our goal is to find out why so many patients are suffering harm and highlight the best ways to solve the problem. Here you’ll find regular updates, and places to share your stories, views or expertise.

Read all of our posts on patient safety, and find out how to get involved.

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