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Dialysis Data, Once Confidential, Shines Light on Clinic Disparities

ProPublica obtained data about the performance of more than 5,000 U.S. dialysis clinics. ProPublica’s Dialysis Facility Tracker allows patients to compare clinics on such measures as patient survival, infection control, hospitalization rates and transplant rates.

ProPublica is making a comprehensive set of clinic records publicly available for the first time on our website.

For years, the government has collected a rich store of data about the performance of individual dialysis facilities. But it has kept nearly all the information secret from those it might benefit most: Patients.

Now ProPublica has obtained this data under the Freedom of Information Act. We are making a comprehensive set of clinic records publicly available for the first time on our website.

Patients and others can search for a clinic and see how it compares on 15 key measures, ranging from mortality and hospitalization to transplant rates and infection control. Also on the site are historical reports dating to 2002.

Release of the data is long overdue, patient advocates say.

"It gives you a snapshot of what a clinic is about," said Roberta Wager, a past president of the American Association of Kidney Patients who works as a nurse and patient educator at several dialysis clinics in Texas. "This is your life. Wouldn't you want to have everything in your favor?"

There are almost 400,000 Americans who depend on chronic dialysis to do what their failed kidneys cannot, a number that has grown swiftly over the past two decades, spurred by epidemics of obesity and diabetes.

More than 5,000 facilities have sprung up to provide them with care, stretching into the nation's most rural areas and competing for patients in urban and suburban areas.

Patients today have more choice than ever. Yet most pick centers based on convenience, or on what their doctors suggest, with little notion that even clinics within the same communities can have substantial disparities.

In more than 200 counties nationwide, the data show, the gap between facilities with the best and worst patient survival, adjusted for case-mix differences, is greater than 50 percent. In areas such as Allegheny County, Pa., or Franklin County, Ohio, each with upwards of two dozen clinics, the differences are even more substantial, exceeding 200 percent.

There is also wide variability in how often patients at different clinics are hospitalized for septicemia. Although septicemia cases can be unrelated to dialysis, it is a significant risk for patients, who typically have their blood cleaned of toxins three times a week. Nationally, the rate was about 12 percent a year for 2006 to 2008. But in dozens of counties, the spread between facilities with the highest and lowest rates was more than 25 percentage points.

The federal government, which pays for most dialysis under a special Medicare entitlement created in 1972, has collected data on clinic outcomes and practices patterns for decades.

The Centers for Medicare and Medicaid Services contracts with the University of Michigan's Kidney Epidemiology and Cost Center to carve this information into customized reports for each facility in the country, comparing its results to expectations based on case mix and national averages.

For years, the government has shared the reports with state health agencies to guide inspections and with dialysis facilities.

But very little information has reached patients.

CMS' Dialysis Facility Compare website characterizes patient survival rates broadly as "As Expected," "Better than Expected" or "Worse than Expected." It shows how clinics do in managing patients' anemia and in delivering treatments that remove adequate amounts of waste.

But the site offers no hard numbers on mortality and no information on other measures featured in the complete dialysis facility reports.

Why have these measures been withheld? Dr. Barry Straube, CMS' chief medical officer, gave several reasons. There was concern that some data was incomplete, or that it had been submitted inconsistently by providers, he said in an October interview.

Some measures are adjusted for differences in patient characteristics, such as age or complicating medical conditions, to make comparisons more reliable. But these adjustments have come under fire from some providers for lacking sufficient refinement and for not capturing factors -- such as patients' compliance with treatment plans or socioeconomic or educational differences -- that can influence outcomes.

That can lead to "a very unfair picture of quality in a particular unit," Straube said.

The two chains that dominate the U.S. market for dialysis services, DaVita Inc. and Fresenius Medical Care North America, said they support more transparency in general but cautioned that there are caveats to the material previously undisclosed by CMS.

"The currently available data could be expanded and improved, and the release of Dialysis Facility Reports is only helpful if providers, both large and small, hold themselves to the same consistent, rigorous standards in reporting," a spokesman for DaVita said in a written statement.

Fresenius said it was critical that yardsticks used to measure performance were proven fair: "The testing of measures is a science that is important to ensure that dialysis facilities with valid distinctions in their demographics, makeup and operations are fairly accounted for in the quality measures."

One provider has published its data: Northwest Kidney Centers, a nonprofit that operates 14 dialysis centers in the Seattle area. Joyce F. Jackson, the chief executive, said the organization's quality committee voted to put the reports online last year.

"Having this information validates for us how we're doing—we have a baseline," she said. The board members concluded patients could benefit from it, too.

Consumer advocates say that whatever the data's shortcomings may be, its release is a critical step toward patient empowerment. With more information, patients can compare services independently and learn what questions to ask, said Lisa McGiffert, campaign director for Consumers Union's Safe Patient Project.

Providers also respond differently when they know their results will be out there for all to see.

"Transparency is the way to make improvements happen," McGiffert said.

No one would suggest using outcome data in isolation to assess a dialysis center.

Wager said she urges prospective patients to interview current ones and to tour facilities. She also suggests gathering information about staff members' experience level and turnover rates.

Still, she said she wishes she'd had the data available today when she went on dialysis herself in the early 1980s, before receiving the first of two transplants.

"I had nothing, no frame of reference," she recalled. "It can be overwhelming for the typical patient to understand the numbers, but it should be the patient's right and the patient's decision to have them."

Joyce F. Jackson, CEO, Northwest Kidney Centers

Dec. 23, 2010, 12:14 p.m.

We welcome this public discussion. The nonprofit Northwest Kidney Centers was founded almost 50 years ago, as the world’s first out-of-hospital dialysis provider. We consider ourselves accountable to the community and our patients. That is why for several years we have voluntarily posted the complete individual Dialysis Facility Reports for our 14 facilities on our website, http://www.nwkidney.org. We will explore the ProPublica database with interest, looking for information that can help us improve our care.

Our organization aims to be the model in the field. The database shows that, collectively at Northwest Kidney Centers facilities, our dialysis patients live longer than the national average and more independently because we champion home dialysis. Our hospitalization rate is lower and transplantation rate higher. Our hemodialysis catheter rate is lower and our immunization rate is higher. Our experience shows that people can live well on dialysis if they take control of their health, even with complications like diabetes and heart disease.

With this knowledge at hand, there is more to do. Kidney disease remains a deadly challenge and we want to do a much better job. We founded the Kidney Research Institute, http://www.kri.washington.edu, to apply innovation and discovery to the tough questions that challenge our field. We believe open exchange of meaningful quality information is one of the tools required to advance care for our patients.

Taking responsibility for results is the first step to improving results.

I think the concern about the impact of “patients’ compliance with treatment plans” is a cop out. I would say that “patient compliance” is as valid a surrogate of unit quality as any other measure. It tells me if the unit expects the patient to bend to fit the care they offer vs bending the care to fit the person who needs to use dialysis.

The best quality care helps people learn to accommodate dialysis. Over 20 years of dialysis I have learned to accommodate my CKD5 through a combination of dialysis, diet and exercise. My success using dialysis should be taken as a credit to my provider, Northwest Kidney Centers, because they’re the ones who taught me how to do it.

excellent. database is well-executed. thanks.

The staff of ProPublica deserve a lot of credit for putting together this comparative information about Dialysis Facilities. It should serve as a stimulous for Centers to look at their data and address their copmarative weaknesses. Unforturnately, this data does not show the entire picture. These Clinical parameters are just one part of the measure of quality. The “Faciltiy Factor” which involves such things as care giver/patient staffing ratios; nurse to tech staffing ratios,  standards of ongoing competencies, record keeping to name a few, also need to be qualified in measured the facility’s measurement of quality care. However, hopelfully this is a start in beginning to trully measure all aspects of chronic dialysis care.

stan nussbaum

Dec. 23, 2010, 6:27 p.m.

I applaud your work.
The more data the better.
Given the fact that we spend more than any other country and have some of the worst outcomes data, it is high time that someone begin to give us a glimpse into why.

how do mid west clinics rate-where do i get the report from

Peter Laird, MD

Dec. 23, 2010, 11:03 p.m.

I applaud Robin Fields and ProPublica for making available this important data. It should have been made available right from the beginning by CMS.  Having accurate data to make the best informed decision is a well recognized patient right that we can now exercise more effectively because of this site.

Thank you once again.

Rich Berkowitz

Dec. 23, 2010, 11:29 p.m.

I agree with the previous comments.  There should be better oversight over dialysis centers and the information should be made public for all to read.  Unfortunately that doesn’t mean it will be read by many patients.  Most in-center dialysis patients are too debilitated and don’t particularly get involved in their care once they start dialysis.  Resolving all of the performance and safety related issues highlighted in the ProPublica article will not get us closer to the day when patients get enough dialysis to live the type of quality and more productive life they had before dialysis.  It would not guarantee the rehabilitation needed by many in order to resume their prior life.

The real dilemma is how we get more optimal dialysis treatments for those who want it.  How are we going to provide more frequent treatments as the recent Frequent Dialysis Network Study proclaims is necessary?  How are we then going to extend those short treatments into longer or nocturnal so middle molecules are removed as well as urea?  It’s a fact that for over 30 years we’ve been measuring “adequacy” by minimal and incorrect markers.  “Adequacy” should be thrown out of our vocabulary and “optimal” take its place.

Julie there is a cool feature where you can rank all units in a state by all sorts of criteria.

Go to the front page http://projects.propublica.org/dialysis/

Select from the state list. You should get to a page that shows a map with the units represented by dots; underneath the map a scrollable list of all the dialysis units in the state. I selected California so it’s a list of over three hundred units.

Between the map and the list there is a box “SELECT FACILITY CRITERIA THAT MATTER TO ME”. Click that box.

Now when you check one or more of the boxes on the fly out menu, those categories are now displayed as part of the unit list. You can click on the column heading to sort the list.

Very cool but what is going on with the inspection system in California?

Once you find a unit you want to know more about be sure to check out the actual DFRs - the 2002 to 2010 full reports are available as PDFs. Look at the summary for a particular unit, at the bottom of the unit’s summary there is a line of years from 2002 - 2010. Click on 2010 to see the PDF of that unit’s 2010 DFR.

http://projects.propublica.org/dialysis/categories

There is another cool feature. Click the above link to read the summary description of each statistical category. Then click the “show me details” button to see the Guide to the 2010 Dialysis Facility Reports, which goes through the DFR line by line.

Carolyn Morris

Dec. 27, 2010, 1:53 p.m.

Thank you Propublica for making the information available to patients that need dialysis.  I have had 2 family members that required dialysis and I could not find the information available on the dialysis centers..  In one situation we had to go to home dialysis for satisfactory results.  We are fortunate in the US to have dialysis as an option for end stage kidney failure. The information you have provided takes it to the next level.

Roberta Mikles

Dec. 29, 2010, 8:34 a.m.

I have already had patients/families contact me who have been complaining about the care in their units for months and months. Not until now have they had the data, through this type of transparency, thanks to Propublica’s Robin Fields, in order to compare facilities to see which one provides safer care. They are looking at the mortality, the number of deficiencies, as well as the deficiencies that that were ‘widespread’, etc. Also, looking at infection rates and hemoglobin data. The next step is for CMS to publish the actual dialysis survey reports to their site. This would be real transparency

Roberta Mikles RN
Dialysis Patient Advocate
http://www.qualitysafepatientcare.com

David L. Rosenbloom, Kidney Patient Educator/Advoc

Dec. 30, 2010, 10:14 a.m.

I too applaud ProPublica’s release of the full, available comparative data on dialysis clinic performance, but we must recognize it only tells a small part of the real story of 3-day-a-week dialysis treatment, the outmoded but standard practice of treatment in the U.S. today. We alone among the world’s leading industrial nations cling to a standard that has not changed in almost 40 years, and as a result, continues to endanger people with ESRD, cutting many lives short and keeping thousands from ever achieving an active, fulfilling life again. Our “one-size-fits-all” treatment modality is called “adequate” dialysis. I know from personal experience of 3 years of in-center, 3-days/wk. dialysis that adequate is not optimal. Yes it keeps you alive, but never rehabilitates.

Dialysis patients are encouraged to “not let CKD define who you are”,  but 3-days/wk. dialysis does not provide enough, consistent cleansing of blood toxins to permit a person to ever escape the roller coaster ride of feeling relatively good one day and lousy the next. I spent 6+ years on dialysis, 3 in-center and 3+ doing home hemodialysis. I was in my late 50s and self-employed as a woodworker during the entire period. While in-center, I could never work more than a few hours a week in my shop. I just did not have the energy nor the ability to concentrate on a complex, long-term project.  After I switched to 6-days/wk. home hemodialysis, I no longer experienced the “ups and downs” associated with the 3-day treatment cycle and could work seven days a week. This was not only vital to my business, but also to my continued health.

Numbers and data are fine, but do not equate with quality of life. Only, when we as a nation, move towards daily, optimal dialysis, we will see the true benefits in human terms. What are we waiting for?

Rich Berkowitz

Dec. 30, 2010, Noon

That’s a good question.  What are we waiting for?  It seems like the only ones demanding better optimal dialysis are those already receiving it or those who enjoyed it and have since received transplants.  And they’re not demanding it for themselves, but rather trying to get more in-center dialysis patients to move to away from their debilitating sessions.
I speak from experience as I waited three years to move home.  It’s too long of a story to explain here as a whole presentation at the last Annual Dialysis Conference only touched upon it.  But I definitely can tell very briefly that I suffered a heart attack driving home from a dialysis session and often stayed a couple hours after a session in order to stabilize before attempting to drive.  I finally had to get an extra treatment per week in order to manage my fluid.  That was nearly five years ago.  My nephrologist and I agree I would have died several years ago if I remained in-center.
Would any of it been the center’s fault?  Not really, except for the fact they were practicing the U.S. method of conventional hemodialysis.  Over the years my condition worsened and I became more debilitated.  I even missed important family events because of how poorly I felt.  However, I was receiving “adequate” dialysis.
So, what are we waiting for?  Once again, everything written in the ProPublica series is true.  But we’re not going to really save lives and allow people the chance to live the life they were meant to until a better, more optimal dialysis is delivered to them.  Like David who returned to the productive man he was after three years in-center it can happen to thousands more out there.  Yes, correct the deficiencies out there and make dialysis centers a safer place to be.  But that’s only going to put a dent into the cause of saving lives.  Most dialysis patients in-center will continue to get more debilitated day by day.  As for me, I’m living a full and productive life since being rehabilitated by getting more frequent and longer dialysis.  You can read the whole story of what happened just this year at my NxStageUsers Blog post.
So what are we waiting for?  We need a movement to change the system.  We need an outpouring from dialysis patients and family, and nephrologists to change the system.  We need to break the shackles that convention hemodialysis causes to exist.  We need support from people like Robin Fields to publicize the fact that the U.S. style of dialysis costs too much and provides so little.

jessica swanson

Dec. 31, 2010, 5:29 p.m.

kudos!!! its about time the patients have the right to know. knowledge is power and can save your life. especially in jacksonville florida

Arlene Mullin-Lane Dialysisethics.org

Jan. 2, 2011, 1:32 p.m.

Another interesting fact is that a patient is not told who from their company is represented on the ESRD Network boards. Everything is a secret. I have actual ballots where they vote themselves in. Patients have been complaining to the fox,since the inception of dialysis.
The ESRD Networks need to go.They have not backed patients and even give the behavioral contracts to the clinics.
They make 50 cents per patient,per treatment. Yet the State surveyors have little.
They were set up for quality of care in dialysis. Yet
everything was not validated. They can not tell you how many patients have been dumped. CMS has backed them to the wall. They are immune from not doing their jobs. Well, CMS you know they havent. You need to set up a fairer system then self oversight. It has killed thousands.

After 13 1/2 years of advocating and Senate Hearings, OIG and GA O has known this secret.

No one would kick out a cancer patient and not have an outraged.

Patients need to protect themselves and know they are complaining to the ESRD Networks to no avail. Guaranteed you will get a refusal of help. I know ,as I have been placing dismissed patients in clinics for years. CMS and Sen Grassley have known this for years….not helped…..cause they wont.


m

This article is part of an ongoing investigation:
Dialysis

Dialysis: High Costs and Hidden Perils of a Treatment Guaranteed to All

Nearly 40 years after Congress created a unique entitlement for patients with kidney failure, U.S. death rates and per-patient costs are among the world's highest while the biggest for-profit providers flourish.

The Story So Far

Dialysis holds a special place in U.S. medicine. In the 1960’s, it was the nation’s signature example of rationing, an expensive miracle therapy available only to a lucky few. A decade later, when Congress created a special entitlement to pay for it, dialysis became the country’s most ambitious experiment in universal care.

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