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Editor’s Note: How We Got the Government’s Secret Dialysis Data

After two years of delays, the government recently fulfilled ProPublica’s request for data that track whether death, hospitalization and infection rates at dialysis clinics are better or worse than expected.

Today, we are publishing the first findings from our investigation of dialysis, a treatment relied upon by hundreds of thousands of people suffering from kidney failure. The United States spends billions of dollars annually on dialysis, nearly $80,000 per patient. But by many measures, Americans fare worse than citizens receiving the treatment in other industrialized countries. Critics have long said these outcomes could be substantially improved if lawmakers found the will to re-invent a flawed system of incentives and oversight. For decades, little progress has been made.

As we reported these stories, we made a discovery relevant to every patient on dialysis. We learned that the federal Centers for Medicare and Medicaid Services gathers extensive data about the quality of care at the nation's dialysis facilities and has it analyzed at taxpayer expense. Until now, the government has kept most of that information secret, available only to dialysis providers and bureaucrats.

Patients visiting the CMS website, Dialysis Facility Compare, have had to settle for a watered-down version of the data. They have no access to the government's underlying numbers that track whether death, hospitalization and infection rates are above or below what is expected.

In essence, federal officials have kept two sets of books, one for patients, the other available only to a handful of industry officials and government overseers. The lack of detailed information about the quality of competing dialysis facilities removed the force of the free market by denying patients the power of informed choice.

For two years, ProPublica reporter Robin Fields prodded CMS officials to release this data under the Freedom of Information Act. Initially, she was told by the agency that the data was not in its "possession, custody and control." After state officials denied similar requests for the data, saying it belonged to CMS, the agency agreed to reconsider. For more than a year after that, officials neither provided the data nor indicated whether they would.

Asked why the data hadn't been released to the public, officials told Fields that some of it was disputed or crude -- and that patients could easily misinterpret what it meant.

A few days ago, after the story we are publishing in December's issue of The Atlantic magazine went to press, CMS agreed to release several years' worth of the data. We plan to make it available on our website as soon as possible in a form that will allow patients to compare local dialysis centers.

ProPublica's reporting on dialysis, which will continue in the coming weeks, may be useful as the new Congress takes up anew the question of how to control the cost and quality of health care.

Our reporting found many reasons for the flaws in the dialysis system. Patients are disproportionately drawn from the ranks of the disadvantaged and have not effectively lobbied for improvements. The American approach to kidney disease, with uninsured patients receiving haphazard care until they qualify for dialysis, means U.S. patients are often sicker when their disease is treated.

Some of these issues will undoubtedly prove difficult to address. But the release of the government's previously undisclosed data marks a new chapter. For the first time, dialysis centers will face the full force of transparency. At ProPublica, we seek to publish stories that have impact. This one has had an effect even before it appeared.

Fantastic investigative work! Thanks for keeping after this story and getting this important data. This is why we need watchdog journalism ventures like ProPublica. You guys get stories that regular news outlets miss. Thank you again for the wonderful work that you are doing.

Lisa McGiffert

Nov. 9, 2010, 1:09 p.m.

Bravo to ProPublica for digging and digging and digging until you get the data that will reveal the true picture of dialysis in America. And thanks for your plan to share it with the public so consumers and patients can use it to push for improving care.

Thank you for your work.  I’m a 57 year old dialysis patient that has traveled over 50,000 miles with my home machine, stopping at over 150 dialysis centers in 38 states to help patients learn about a better modality of therapy.  I can’t express my gratitude for your article and getting this information out - it will help save lives!  Thank you Thank you Thank you!

Michael Bennett

Nov. 9, 2010, 3:37 p.m.

The public owes a debt of gratitude to Ms. Fields and ProPublica for doggedly pursuing CMS for the data that has long been known to exist and that has even longer been denied to the public. And an even greater debt of gratitude is owed to RN Roberta Mikles, whose untiring efforts over the last six years since her and her father’s unconscionable experience and treatment with dialysis. Roberta is one of the many unsung heros of the consumer movement that have made a difference in so many people’s lives. Thank you from all of us, Roberta.

Michael Bennett
The Coalition For Patients’ Rights

I will soon be faced with the choice of dialysis, and which type if I choose to go ahead.  I had no idea that I would not be able to research outcomes at different facilities in my area, so am incredibly grateful at Pro Publica’s dogged determination in forcing the government to do what should be obvious; the right thing!

Why must so many simple and obvious requests for honesty fill so many in government with apprehension?  It just goes to show that the marriage of oversight responsibilities and those being overseen, needs major overhauling in every aspect of those relationships.

Thanks again for this one victory which may possibly determine the quality of my remaining life.

Thanks so much for your good work. CMS’s response to your request for information—that disclosure would mean that patients might misinterpret this crucial data—is so very typical of the paternalistic approach to patient care. I am a dialysis patient who does nightly home treatments, and I am all too familiar with healthcare professionals treating patients like children. Just as one tiny example, I brought home a brochure on kidney disease that was illustrated with walking, talking, hat-debecked cartoon kidneys. My son glanced at it and flippantly asked, “Is there an adult version of this?” Kidney patients face the possibility of death every day. CMS is not trying to safeguard patients’ feelings with the withholding of vital stats; it is trying to cover its own ass!

Well done, journalism at it’s purest and simplest: going after the facts because there’s a genuine public interest. It illustrates what can happen when government embraces ‘business partnerships’ with its suppliers, ie they form a cosy little cartel. Never was I more thankful to live in a country – England – with a national health service under permanent media and independent watchdog scrutiny.

ProPublica:
“For two years, ProPublica reporter Robin Fields prodded CMS officials to release this data under the Freedom of Information Act. Initially, she was told by the agency that the data was not in its “possession, custody and control.” After state officials denied similar requests for the data, saying it belonged to CMS, the agency agreed to reconsider. For more than a year after that, officials neither provided the data nor indicated whether they would.”

There is no inconsistency between what Robin Fields was told by CMS or the states because ESRD data is in control of the ESRD Networks.  ESRD Networks are in the Social Security Act, but they are quasi industry entities populated by private sector staff with boards dominated by local nephrologists in private practice.  In other words, they are the dialysis industry.  They should not exist because they represent a direct conflict of interest.  ESRD Networks collect and maintain individial patient data.  They do not want this data easily accessible as facility-specific data because such information would undermine their client base, i.e., local dialysis facilities and the nephrologists who run, and in some cases, own them.  It is precisely because of FOIA requests by reporters like Robin Fields or requests from CMS staff in the survey and certification enforcement area that ESRD data is maintained in this manner.  This needs to change in the best interests of patients and the taxpaying public.  Dig deeper.  This is much worse then you imagine.

Roberta Mikles, RN Dialysis Patient Safety Advocat

Nov. 11, 2010, 9:32 p.m.

In order to have full transparency, both the dialysis facility reports, and the dialysis facility survey findings, should be posted on the CMS website being the Dialysis Facility Compare data does not provide enough information in order for patients to make informed choices of where to receive their treatments. Perhaps the money that goes towards the Networks should be put into patient care and maybe someone should look at what the Networks actually do and see if this is not being duplicated and is it really needed. Perhaps, just a complete overhaul of the dialysis world would best benefit patients.
Roberta Mikles
http://www.qualitysafepatientcare.com

Lori Nerbonne

Nov. 13, 2010, 9:30 p.m.

All we have to do is look to states that have passed infection reporting laws to see that transparency of healthcare outcome data is the best medicine.  It provides patients with informed consent, pulls back the curtain on under-performers, reduces the cost of care, prevents patient harm, and saves lives.

The same can be said for dialysis outcome data and it’s long overdue.

Roberta Mikles RN Dialysis Patient Safety Advocate

Nov. 14, 2010, 3:33 p.m.

All dialysis facilities in the US should follow after Colorado in their state-level legislation for dialysis facilities, e.g. infection data reporting to the CDC’s NHSN. If Colorado facilities can do such, every other facility should be able to. We can not accept excuses of why other facilities, outside of CO, can not report the same as CO.

Roberta Mikles
http://www.qualitysafepatientcare.com

All the comments that I have read, and I believe I’ve read all of them, talk about either in-clinic hemodialysis or home hemodialysis. These are NOT the only options!!!!! I have been a peritoneal dialysis patient now for almost two years.

It is easy to learn. I have traveled with my machine to France, twice to Canada, taken a road trip to Arizona and a camping trip along the California coast. Of course, I hate dialysis as I’m sure all patients do. Having a foot-long piece of dialysis tubing issuing from my abdomen means that every date I tell about dialysis is scared away. Having to “hook up” every night for 10 1/2 hours means that my social life is hugely curtailed. But I feel good. I do not have recovery time as do hemo patients. I am responsible for my own care, and I like that. Peritoneal dialysis is the best modality in my opinion.

Bonnie Freshly, Forum Coordinator

Nov. 19, 2010, 10:09 a.m.

If you wish to learn more about the ESRD Network Program, please visit:  http://esrdnetworks.org/.

Roberta Mikles, RN Dialysis Patient Safety Advocat

Nov. 24, 2010, 3:06 p.m.

Dialysis facilities should be mandated to report preventable errors resulting in harm and death. Medicare and other insurances should NOT reimburse facilities when such happens.

I must ask if the Networks believe there has been improvement in care, with their involvement, and if so, can readers have more explanations.
Roberta Mikles RN
http://www.qualitysafepatientcare.com

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.

More »

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