Patients Speak to the Dialysis Industry

Taking you up on your suggestion to check out KCP’s Kidney Quality Iniative, I read the section of meeting notes on Quality of Life/Patient Perspectives. Dear Lord Bill, what language do you folks speak in these meetings? Again, it was all greek to me and I did not even hear a mention of the main issues that I am concerned about. How would the average dialysis patient even relate to such a meeting?

I hear what you are saying about getting laws on the books in order to more finely address the real problems. Have there been no laws to this point to do so? As I have said before, the companies, networks and state regulators have all kinds of regulations on their books for patient care- the problem is, they are not enforced strictly.

This new bill seems like a smokescreen to me. It seems to say, the reason we have so many problems in dialysis is because companies do not get paid enough. I quess that is the fundamental difference of opinion between us- I do not feel that dirty units, staff not washing their hands and other related issues of care has anything whatsoever to do with the amount of payment- I feel it is an enforcement issue.

I am not in anyway saying that I do not believe units should be paid appropriately with annual increases. But I am saying that we have a very fowl problem in the dialysis industry of a serious breech in patient care.

Most definitely, let’s start a new thread (or a separate board within this site), because I think it is so essential that we keep this issue in the public eye. If the powers that be don’t respect this site, I don’t know what site they would respect. Dori and Beth have done an exemplary job of managing HDC, a site dedicated to bringing out what educated patients desire for safe, optimal dialysis care.

The basic tenants of dialysis care have been ignored by the dialysis industry. As educated patients, we must continue to talk the subject up amongst ourselves and strive to find the solutions to the enforcement problem.

If your focus is to make units pay a direct price, a fine, for having a dirty unit or for staff not washing their hands then I agree these proposals do not imagine that sort of punitive process. The Pay for Performance that I advocate for is much more carrot than stick.

For instance the idea of rewarding providers that have a low rate of hospitalization is high on my wish list. I see a hospitalization as an unambiguous negative and to the degree that providers can keep people out of the hospital I think that is worthy of reward. Certainly one would expect that units that are trying to minimize hospitalizations would follow universal precautions. So I contend that a carrot approach does address the specific issues that you mention.

Jane you seem to want a system that includes policing and fines and ultimately I assume you would shutter units that are repeat offenders. Current laws allow Medicare to rescind certification but I am having trouble imagining a situation where that would be the best solution.

For instance I visited a unit in CA (Palm Desert) in the early 90s that is at the top of my personal list of poor units Worldwide. There were issues around washing hands and over all cleanliness but my greatest concern was that they dialyzed the majority of their people for three hours – I couldn’t even get a 4.5 hour run, they reluctantly agreed to run me for 4 hours. I was shocked to hear their BS explanation for the three hour runs – I think it is fair to say that at that unit there was no evidence of staff knowledge – what they self reported to know was wrong - let alone patient knowledge or engagement.

So what would be in the best interest of the dialyzors at that unit? Fines? Shut them down? Would those things help the dialyzors?

I do not agree. There are individual units that are suboptimal but the entire dialysis industry? Based on what evidence? Where is your model of care? Abroad? Let me tell you that Europe is the land of stray hairs … if you’re looking for obsessive hand washing don’t bother looking outside the US.

I’ve been to many meetings and sat through many phone calls about how to create an optimal incenter system of care for dialyzors. Starting with my provider – the Northwest Kidney Centers. There are no easy answers.

General statements such as “The basic tenants of dialysis care have been ignored by the dialysis industry” are not constructive. It is hard for me to even know where to engage with you other than to say … I hear you, you’re mad, this is hard.

I know what you’re against. What are you for?

I will be responding to your post in a more broad based way in the days ahead. I happen to be in a busy period in my personal life and will only be jumping on the net very quickly for the lighter posts as I find a second here and there in the next month or so. Will jump in this thread, too, but not fully until later.

Also, because this subject is so important to me, I am taking the time to consult with ppl I know who work in the industry, as well as patients, family members etc. to get their input as to what they feel are the contributing factors that produce violating units, how widespread the problem is and suggested solutions.

Bill writes:

I’ve been to many meetings and sat through many phone calls about how to create an optimal incenter system of care for dialyzors. Starting with my provider – the Northwest Kidney Centers. There are no easy answers.

What have you learned through these many communications?

To the members of this site: What do you think is the cause of violating units and what do you think is the solution?

Home hemo! When do you start training Jane? Lin.

Sometimes I wonder, but maybe money isn’t everything…I know that some of the problems will still persist regardless whether or not clinics get higher reimbursements, but I think its like saying from the famous John F. Kennedy quote…

“Ask not what your country can do for you -
ask what you can do for your country.”

Lol, Lin. very, very soon…how about you?

Hopefully soon, although putting the addition on (our house is barely 900 sq. feet…) is proving to be a pain; all the rules, town officials ect… ughhhh! I hope we both get on “it”, do well, and don’t look back. It takes a lot out of me at this point to worry about every little thing in the units. I know you must be mentally drained also! :roll: We need a break. Worrying and taking care of family plus other things 24/7 is exhausting and burnout is no picnic. Lin.

Reflecting back on the 2000’ Senate Hearing on Dialysis and how far we’ve come to this point.

Brent Smith:

Mr. Chairman and Members of the Committee. Thank you for inviting me to
testify today.

My name is Brent Smith. My exposure to the dialysis industry began in 1973,
two weeks before my 18th birthday. A year later, I received my first
transplant which was from my mother. Two months later, the kidney failed due
to infection, and I returned to dialysis. In 1977, I received a second
transplant from my grandmother. That transplant succumbed to complications
in 1990. I returned to dialysis in the fall of that year. Soon after, it
became all too clear that the entity providing treatment, its
administration, the support staff, and many of the standard procedures with
which I was familiar had changed drastically.

Over the last ten years, as a patient, I have witnessed the gradual decline
in competency of those given the responsibility of my care. In my view,
efficiencies intended to enhance the financial position of the providing
companies expose patients to great risk and may even hasten their demise.
This trend continues and worsens each years as providing companies focus on
bottom line management and not patient care. The major concerns of dialysis
patients fall within the following five interrelated components. I have
provided more detail in a longer statement submitted for the record. They
are the following: Adequacy of dialysis Competency of patient care
technicians Knowledgeable and disciplined nursing staff Facilities and
technology (machines) Accountability

Adequacy of Dialysis

The adequacy of my prescribed treatment relies heavily on me, my discipline
with regard to diet and fluid restrictions, and my oversight of my dialysis
treatment. Because I am very disciplined in my care, I can allow the
dialysis machines to do their work. I have worked to become very
knowledgeable in what is needed for my care. Other patients who are less
familiar with the dialysis process are very vulnerable.

One of the areas that needs to be addressed by research is adequacy of
dialysis. I can only tell you my personal experience with the amount of time
I dialyze. When I dialyze four hours each session, I feel better. When
treatments have been shortened in the past, over time my energy levels are
depleted. In addition, complications appear from fluid retention, such as
higher blood pressure and shortness of breath. I, and other patients, feel
lethargic and have little appetite. So, I can only conclude that the amount
of time on dialysis is a factor.

Competency of Patient Care Technicians

Second, in the year I started dialysis, the care givers were mainly nurses
from the top graduating classes, as well as medical students, and other
medical technicians. Almost every technician had a college degree, and every
technician had previous medical experience.

Today, I see technicians with only a high school diploma. In Arizona, a
manicurist is subject to more licensing than a dialysis technician. When I
first returned to dialysis, I had technicians handle my blood and my life
who were convicted criminals, strippers, and refrigerator technicians. The
ratio of patients to technicians, at times, is now 5 or 6 patients to every
technician. This is not safe, and it doesn’t work.

A main worry for dialysis patients is vascular access. A patient told me
recently of a treatment where it took eight attempts by technicians to
initiate her treatment - eight sticks by 16 gauge needle! Not only is this
painful, it increases the risk of infection and could destroy that access.
There are limits to vascular access with each patient. When vascular access
runs out, a patient can no longer dialyze and can die. Many other patients
have told me of similar occurrences. These examples, involving poorly
trained, unsupervised technicians include the following: target weight
miscalculations that could cause blood pressure decline. On one occasion,
staff miscalculated the projected amount of fluid to remove from me by a
significant margin. When this happens, a patient feels extremely weak and
lightheaded at best. At worst, a patient can severely crash, losing
consciousness with a blood pressure far lower than levels needed to maintain
life. Also, patients experience excruciatingly painful cramping, and
treatments will be shortened because the patients cannot withstand
additional treatment. too much or too little heparin, the blood thinning
agent. Too much heparin thins the blood and could lead to the patient’s
inability to clot blood; so they could bleed to death. Too little heparin
allows the blood to clot in the machine and stop the flow of blood back to
the patient. placement of a dialyzer on the wrong machine for the wrong
patient. This is a potentially fatal error. Disregard for the Universal
Antiseptic Code, the protocol that protects both patient and technician
alike from infectious germs, viruses, and bacteria. This is one of the
largest and most common reasons patients are hospitalized.

The Journey’s Beginning…

Brent Smith:

Another example of the training deficiency among dialysis technicians stems from my personal experience. In 1994, I suffered an extended period of appetite and weight loss. As part of my routine assessment prior to each dialysis session, I explained that I had not been eating properly. I reported this for almost four months. The food I was eating did not provide me with sufficient potassium for my prescribed potassium bath. During the fourth month, during the third hour of a four hour treatment, I suffered a cardiac arrest attributable to the low potassium in my system. The attending technician did not recognize this problem. Another technician took over to attempt resuscitation until the paramedics arrived. Upon arrival, Emergency Room records reflected a potassium level of 2.9, well below the 3.5 recommended range. Discharge Summary records showed fibrillatory arrest, secondary to hypokalemia, which is low potassium. The dialysis technician did not correlate the loss of my appetite with the low potassium bath. The seriousness of the problem and possible results were never brought to my attention or to the attention of the charge nurse, the dietitian, or my


Knowledgeable and Disciplined Nursing Staff In addition to competency and training of dialysis staff, I believe that the staff must be knowledgeable and disciplined. I have witnessed instances where floor nurses lacked familiarity with the machines and their functions. These are complicated machines that stand between life and death of dialysis patients. Lack of
knowledgeable staff exposes patients to dangerous circumstances.

Moreover, lack of discipline or failure to PAY ATTENTION is a primary source of incidents, affecting patient care. On one occasion soon after my return to dialysis, staff drained off too much fluid from me during dialysis. This exposed me to a crash in my blood pressure and loss of consciousness. I am aware of another instance where a patient bled to death, because no one was watching, while the patient’s blood inadvertently drained into a trash can while the patient slept. It is instances like this that cause me to do everything in my power to stay awake throughout my four hour dialysis and try to watch every move of the staff attending me and to watch the fluctuations on the dialysis machine.

Facilities and Technology (Machines)

Not all facilities where I have dialyzed have been well maintained. Too often poorly trained or overworked staff will choose speed over substance in attending to patients. Worn, older, overused machines are not as effective and efficient. One problem in dialysis is the way dialyzers are reused. Even though they are labeled for “single use only” many are reused in this
country as much as 30-50 tunes. I do not reuse dialyzers. However, as a patient advocate of many years, I have observations and experiences with regard to reuse of dialyzers from other patients. The efficiency of the dialyzer can decrease as much as 20% over the span of reuse. In turn, it is as if the patient’s treatment tune has been reduced by 20%. No adjustments
are ever made to compensate for this loss. As a result, the patient’s lab reports get worse as the patient’s condition gets worse. Moreover, many patients aren’t aware that they don’t have to reuse dialyzers and that the mortality level is higher with reuse. I know of one woman who could only reuse eight times before she felt very bad.In addition, I have been told by staff that Medicare pays for a new dialyzer after each session. However, my experience is that dialyzers are used as much as 30-50 times. In fact, facilities have had to establish elaborate procedures to clean, sterilize, and catalogue dialyzers to ensure that patient receives their own dialyzer
during sessions. I am aware of one technician who processed one patient’s dialyzer bar code and passed and approved all other patient bar codes on that basis. This violated the procedural rules and, of course, exposed patients to potential harm.

Accountability One of the most important aspects of patient care relates to their relationship with the dialysis staff. Staff must be accountable for the level of care provided to patients. They must demonstrate strict adherence to set policy and procedure. Appropriate discipline must be administered for breach of policy and procedure. This is life or death situation. In my experience, technicians are rarely written up for minor or major infractions, involving patient care. I have seen technicians abuse the glove policy, exposing patients to possible infection. I have seen technicians reading magazines while on duty rather attending to patients. I have seen technicians engage in distracting conversations when inserting or removing needles from people.

In all my years on dialysis, I have never seen a government surveyor review a facility where I have dialyzed. In fact, I am unaware of any surveys of any facilities where I have dialyzed. I am greatly concerned as a dialysis patient about oversight of this industry.

In closing, throughout my life I have strived to avoid the label, “dialysis patient,” and the stigma associated with it. Yet, today I appear before you, in the public forum, as a dialysis patient, because of the importance of the issues being discussed here today. Patients can and do lead productive, purposeful lives. However, it has become an increasing burden to do so. Monitoring a technician’s abilities during every treatment, week after week, is a tremendously stressful undertaking for a dialysis patient. Enduring the limits and inadequacies of the present system of dialysis compound the
already difficult treatment into an intolerable, unjustifiable, and inexcusably frustrating experience.

My purpose today in appearing before this committee was to present the life
of a dialysis patient to you. It is my life, and that of many others. We
live it every day. You cannot possibly understand it. I sincerely hope you
or a loved one will never experience it, but I do implore you to do
something about it.

Thank you.



DATE: June 27, 2000

For more background on this courageous patient advocate, now deceased, who testified at the 2000’ Senate Hearing on Dialysis to influence improvements in care for all dialysis patients visit:

Brent Smith

You can read the other testimony that was presented at those hearings six years ago here:

This is the statement of William J. Scanlon, Director Health Financing and Public Health Issues Health, Education, and Human Services Division

And Here:

is the year 2000 GAO report to the Committee on Aging. Taken all together they all talk about the same thing. So what happened?

Jump ahead three years and here is the 2003 GAO report

And then you can read Senator Grassley’s take on the situation:
This is the 2003 follow-up letter that Sen. Grassley wrote to DHHS (now CMS). You can see from this letter that Senator Grassley believes that it is Medicare’s responsibility to fix the problem; that Medicare already has all the statutory authority it needs.

So what has Medicare done? They convened an advisory board on bundling. You can review my take on the Bundling Advisory Board here:
They have published revised Conditions of Participation. Here is a synopsis:
But who knows when the Conditions will be published in a finalized version. When they are they will give increased impact to surveyors but that doesn’t address areas of the country (unlike Washington State) with weak survey regimes.

Anyway all this brings us to today and the fundamental discussion of how to create incentives, carrots & sticks, that will achieve desired outcomes. But which outcomes exactly?

The first step is to decide what should be measured, on what basis should we judge the quality of a dialysis provider? Blood measures i.e. kt/v, hgb, albumen? Process measures i.e. availability of home or self care modalities, evening hours, ongoing education? Or survey measures i.e. asking dialyzors about their perception of care, functionality surveys, SF-12? Or outcome measures i.e. mortality, hospitalizations, work status?

Once you decide on the menu of measures then you can decide on the range of positive and negative incentives that you think will achieve your desired outcomes. But first you need to decide what exactly are your desired outcomes.

I think the most useful history to spend time looking at is not the ESRD program, rather the history of nursing home regulation. There are many parallels between the ESRD and nursing home industries, many of the same dynamics are at work. However, the interesting difference is that the regulation of the nursing home industry is about 10 -15 years ahead of the ESRD industry. As I read accounts giving an historical over view of nursing home regulation and the underlying dynamics at work in the 90s, I thought many times that I could cut and paste whole pages of information, do a global word find & replace (dialysis for nursing home) and it would be an apt description of today’s situation.

Check out nursing home legislation and debate from the mid-90s for ideas on what could be done for improving tomorrow’s dialysis care.

Jane you asked

“What have you learned through these many communications?”
I’ve learned that dialysis industry oversight flows from Medicare’s involvement as the primary payor for the majority of dialyzors. Medicare is the ESRD rule setter in this country. Legislation by Congress is money based because that is Congress’s constitutional role. Congress controls the purse. Pay for Performance legislation is an attempt by Congress to help Medicare achieve better outcomes, however it is still Medicare’s job to create a system that maintains a certain minimum standard of care.

The legislation I support does not help maintain the minimum but it does offer incentives to go beyond the minimums and try for optimal. I basically agree with Senator Grassley’s 2003 letter. Medicare has all the regulatory power it needs to establish and maintain minimum levels of care. Legislation is needed to support optimal care. Optimal care requires there is not a yearly inflation cut to reimbursement, optimal care requires that dose frequency is decided between the dialyzor and his/her nephrologists, optimal care requires staff who meet minimum standards, etc.

Hi y’all,

Bill wrote:

But who knows when the Conditions will be published in a finalized version.

Per CMS (from a meeting I attended a couple of weeks ago), the updated Conditions are expected to be released in spring of '07, with a 60-day implementation window. Judging by the pushback on the 60 days, it wouldn’t be at all surprising if that’s extended–after all, it took 29 years to update the Conditions for Coverage, what’s a few more months!

I think the most useful history to spend time looking at is not the ESRD program, rather the history of nursing home regulation.

Interesting thought! I think you’re right on target, Bill. One of the problems that I’m aware of (and GAO documented a couple of years back) is that most dialysis centers are only inspected every 3-5 years or so, with some going as long as 9 years between inspections. In some states, if not most, the same inspectors evaluate nursing homes and dialysis centers. The problem is, nursing homes are required by law to be inspected every year, but dialysis centers are not. There may also be more nursing homes than dialysis centers–I’m not sure. Either way, the manpower is going to nursing homes.

This isn’t necessarily inappropriate, since nursing homes are residential facilities, while people come and go from dialysis centers. It’s important to keep that in mind. However, given that the treatments provided in dialysis centers have a large potential for harm if they are done incorrectly, if aseptic technique isn’t maintained, etc., in a perfect world, more resources would also be devoted to inspecting dialysis centers or finding some other way (anonymous tips via a website?) to ensure that patient complaints related to safety are dealt with quickly and appropriately.

That 2003 GAO report lays it out:

CMS has expanded funding to support state ESRD survey activities, but its monitoring of state agencies’ performance of surveys and providing technical assistance is uneven across CMS regions. CMS substantially increased its aggregate funding for ESRD surveys from an estimated $3.1 million in fiscal year 1998 to $8.2 million in fiscal year 2002. At the same time, several regional offices in our study did not actively oversee or assist in improving ESRD survey activities. In addition, CMS has not removed barriers between federally funded ESRD networks and state agencies that inhibit the sharing of information on the performance of individual dialysis facilities—information that could assist states in targeting their inspection resources.

Furthermore, surveyors in several states reported that CMS has not offered adequate training opportunities for surveyors inspecting ESRD facilities.

To encourage ESRD facilities to adhere to Medicare quality standards, we suggest that Congress consider authorizing CMS to impose immediate sanctions, such as monetary penalties or denying payment for new Medicare patients, on dialysis facilities cited with serious deficiencies in consecutive surveys. We are also recommending that CMS: conduct more frequent surveys of facilities with serious deficiencies; publicize facilities’ survey results; encourage state agencies to use ESRD-specialized surveyors; expand ESRD surveyor training opportunities; require periodic, routine sharing of information between ESRD networks and state survey agencies; and enhance oversight of state agency performance.

The report is saying that while funding for inspections has gone up there is no oversight or quality check on the state process. The GAO report gives CMS’s comments when shown a draft of the GAO report:

(my emphasis) CMS affirmed its commitment to strengthening oversight of dialysis facilities and state survey agencies, but did not indicate an intention to implement five of our six recommendations. Instead, the agency highlighted its efforts to develop tools to assist states in selecting facilities for inspection and to make the survey process more uniform.

Making the process more uniform is fine but the GAO has a much more comprehensive vision. Remember these are the GAO’s recommendations:

conduct more frequent surveys of facilities with serious deficiencies; publicize facilities’ survey results; encourage state agencies to use ESRD-specialized surveyors; expand ESRD surveyor training opportunities; require periodic, routine sharing of information between ESRD networks and state survey agencies; and enhance oversight of state agency performance.

The report’s summary concludes by saying:

We continue to believe that more focused efforts to evaluate compliance with Medicare requirements and stronger actions against poor performers are needed to ensure an effective, consistent, and timely ESRD survey and certification program.

What would it take to get CMS to implement the GAO’s 2003 recommendations. I particularly think something as simple as “publicize facilities’ survey results” coupled with publishing each Dialysis Facility Report would be a very low cost way to have a large positive impact quickly.

I think the most useful history to spend time looking at is not the ESRD program, rather the history of nursing home regulation.

A RN friend who was a nursing home surveyor pointed this out to me 2 yrs ago, so yes, agree.


What would it take to get CMS to implement the GAO’s 2003 recommendations. I particularly think something as simple as “publicize facilities’ survey results” coupled with publishing each Dialysis Facility Report would be a very low cost way to have a large positive impact quickly.

Absolutely! Believe this is what the nursing homes must do. Dialysis Compare does not go far enough. And according to what someone shared with me recently, DC is on the honor system and not all reported outcomes are honorable.

Thank you for all the reports shared today and ideas for improvements. This is what is needed in a non-hostile public forum.

So if you want to go deep into dialysis advocacy there are ways, it takes faith, but you never know what actions will work. Jane you mentioned that Dialysis Facility Compare does not provide enough information. Well the information they do supply is obtained by a form that every dialysis unit must supply. Every year that form is reauthorized and in the process of reauthorization CMS publishes a request for comment in the Federal Register.

This is from the Federal Register: May 26, 2006 (Volume 71, Number 102) which is available online here:

5.Type of Information Collection Request: Extension of a currently approved collection

Title of Information Collection: End Stage Renal Disease Medical Information ESRD Facility Survey

Use: The ESRD Facility Survey is completed by all Medicare-approved ESRD facilities once a year. The survey was designed to collect information concerning treatment trends, utilization of services and patterns of practice in treating ESRD patients.

The aggregate patient information is collected from each Medicare-approved provider of dialysis and kidney transplant services. The information is used to assess and evaluate the local, regional and national levels of medical and social impact of ESRD care and are used extensively by researchers and suppliers of services for trend analysis.

The information is available on the CMS Dialysis Facility Compare website and will enable patients to make informed decisions about their care by comparing dialysis facilities in their area.

The ESRD Facility Survey Public Use File is also posted at:

So I think this is the form that is informing Dialysis Facility Compare. By publishing in the Federal Register CMS is asking for comments.

In compliance with the requirement of section 3506©(2)(A) of the Paperwork Reduction Act of 1995, the Centers for Medicare & Medicaid Services (CMS) is publishing the following summary of proposed collections for public comment. Interested persons are invited to send comments regarding this burden estimate or any other aspect of this collection of information, including any of the following subjects:
(1) The necessity and utility of the proposed information collection for the proper performance of the agency’s functions
(2) the accuracy of the estimated burden
(3) ways to enhance the quality, utility, and clarity of the information to be collected
(4) the use of automated collection techniques or other forms of information technology to minimize the information collection burden.

b ways to enhance the quality, utility, and clarity of the information to be collected;[/b]

I read this as asking for input on the Dialysis Facility Compare Website. If you think Dialysis Facility Compare should include additional information (off the top of my head: ongoing dialyzor infection control education; modality education – what do you think should be reported on DFC?) this seems like an opportunity to comment.

To be assured consideration, comments and recommendations for the
proposed information collections must be received at the address below,
no later than 5 p.m. on July 25, 2006.
CMS, Office of Strategic Operations and Regulatory Affairs,
Division of Regulations Development–A,
Attention: Melissa Musotto,
Room C4-26-05
7500 Security Boulevard
Baltimore, Maryland 21244-1850

Maybe something else that could be reported is the date of the last State survey.

For Dialysis Facility Compare to report data, it must get the data from a reliable data source. No matter how much we’d like to know it, there is no collection of data on patient education. There is no criteria for what constitutes what education should be recommended and how to tell that a patient heard, understood, and retained the education provided.

A lot of groundwork needs to be laid before DFC could reliably provide data on this topic. That’s why the Kidney Care Quality and Improvement Act has a provision that would establish an advisory board to recommend a curriculum that could be offered to all patients and provide Medicare funding for patient education. Another hurdle to overcome will be how to monitor whether clinics actually provide comprehensive patient education or don’t just say they have.

Here’s an article on infection control from 2002 that includes recommendations:

I found it on this website – – under the Reports and Publications tab.

Dialysis Facility Compare is there for dialyzors and those who love us to make an informed choice, this is an opportunity to provide feedback. I don’t think someone has to have the solution to point out a need. If Jane wants information on infection control that’s all she needs to say. I think listing the dates of the last few State inspections would be useful.

Beth if CMS asked you and Dori to devise measures I think you would be able to figure it out. I think what a dialyzor advocate should do is write CMS and tell them what they would like to see on DFC. Medicare is suppose to be doing all this for us dialyzors.

I suggest that patients do comment on what they’d like to see. However, I just said what I said so people know that there are limits if the government isn’t currently collecting data or if data is collected but not for public reporting. It’s possible that some of the data that was protected from public reporting or even from obtaining it through the Freedom of Information Act a few years ago when I was on the workgroup developing the tool to help surveyors is now available, but it may not be available by individual clinic.

Most people don’t realize and I know I didn’t just how hard it is to get any new data collection. Dori and I have been advocating for literally years to get the 2728 to collect data on the education level of patients. Knowing this would help us design education materials written a few grade levels below that to make sure most patients could understand. We’ve been told that 1) collecting one new data field would require added time and would be a paperwork burden on providers, 2) providers historically oppose new data collection, and 3) any change in the current form would require OMB approval, a process apparently akin to pulling teeth. Forms are not revised every year and there is little publicity about when a form is being revised. This reduces the chance to offer feedback. Unless you’re really lucky, you may learn about a form review just after the comment period ended so you can’t mount an effort to get patients and professionals to recommend what you want included.

MEI was lucky to find out a few years ago that someone was trying to get employment removed from the CMS 2728 form. Apparently no one was thinking about how it was important to know if people were losing their jobs in the 6 months prior to kidney failure or that maintaining jobs was a major goal of the ESRD program. When MEI learned about it, we mounted a successful advocacy effort with rehab enthusiasts that resulted in more than 120 letters to CMS from organizations, professionals, and patients. The employment fields were not deleted. This example shows that not only is it hard to get new fields, but you have to be ever vigilant to keep key fields on data collection forms.

Why doesn’t DFC report what percentage of patients under 65 are in school or working? Why doesn’t it report what percentage of patients are doing PD or HHD? Why doesn’t it report if the clinic offers evening shift dialysis? All of these data elements are collected by Networks. These would be measures of whether clinics are accommodating patients’ school and work schedules and providing excellent care.

This is the type of productive discussion on corrective measures I have desired to take part in–THANK YOU! Although I don’t have time to comment on everything at the present time, as stated previously, I am following the entire discussion, closely, and taking note of suggested strategies for making my voice heard.

One major thought I have had is that 99% of the patient population is completely removed from any knowledge of, or participation in, the process that directly affects their care. It seems essential to me that there should be a way that all patients/and/or their familes can be directly informed, and involved, in the policy making process.

Although things must be done decently and in order, patients who are ill, up and down in their health, and who for whatever reasons are unfamilar with the ESRD system, the language and how it operates, require proper advocacy/representation. The very people the system is to serve and protect are basically absent from the equation. This is a voting system where only a very small percentage of the patient population are aware of what goes on and take an active part, and those who may not even closely represent patients’ desires for care and their best interests, make the policies. So, I would be interested in hearing ways the policy making process can be made assessable to the “average” patient.

Also, as I have stated and Beth partially confirmed, there is a serious problem with units falsifying the fact that they have delivered patient education/ info/services, when in fact they have not, so the honor system does not work and another method of ensuring same is necessary.

Hi Jane. I’m not an expert on this by any means, but it’s my understanding that the CAHPS In-center Hemodialysis survey (CAHPS = consumer assessment of healthcare providers and systems) is intended to do much as you suggest: provide a way to collect patient input on satisfaction with care. From the website of the Agency for Healthcare Research and Quality (, it says “In 2000, the U.S. Office of the Inspector General recommended developing a standardized survey of patients’ experiences with care to provide valid comparative information to the public. MedPac’s Report to Congress in 2003 also reiterated the need to evaluate ESRD patient satisfaction. In response to these recommendations and to ensure quality of care for dialysis patients, CMS has decided to develop a survey that can be used both for internal quality improvement at the facility level and for public reporting to patients and caregivers.”

Based on the results of these surveys, CMS will have a birds eye view of trends that concern patients, with numbers large enough that they should be able to act on at least some of them. This survey is currently being finalized.

In the meantime, you can always have input as a consumer by contacting your elected representative or writing letters to the editor of your local (or national) papers–both of which you can do through the Legislative Action part of this site (