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September 23, 2010


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Miriam Lippel Blum

Excellent comment, Bill. I particularly liked the idea of comparative "report cards" showing an individual's results with the CMS standards, etc.

I also didn't realize that the unit QIP information would be unavailable to the patients. I think your point about CMS not being patronizing to people who utilize in-center dialysis is a good one. How can anyone make a reasonable decision about where to get treatment or give informed consent for treatment at a facility if information vital to their well being is withheld?

Peter Laird, MD

As always Bill, you have the handle on the politics of dialysis. Public information should be public, otherwise it will not allow people to choose wisely as Miriam pointed out in her comments above. Thank you for taking the time to delve into the details.


Given that the selection pressures of a million years of evolution have honed normal male hemoglobin values to fall in the range of 140 to 180, with female values about 20 points below, it is astonishing that nephrologists continually maintain that the very much lower hemoglobin levels which they believe they can safely obtain for their patients somehow turn out to be just right for the renal patient population. Although in nephrology a hemoglobin of 115 counts as adequate, studies of anemia in other branches of medicine have found that hemoglobin levels less than 130 in males and 120 in females produce significantly diminished quality of life. (G. Krishnan, et al, "Assocation between Anemia and Quality of Life," BMC Pulmonary Medicine, vol 6, p. 23 (2006)) In an atmosphere of cost-cutting and a fixation on avoiding rare but lethal events rather than providing a high quality of life for the majority, arguments for the possibility of a safe normalization of hemoglobin in renal patients without severe heart disease are ignored. (A. Besarab and R. Byrd, "Should the Hemocrit be Normalized?" Blood Purification, vol. 19, no. 2, p. 168 (2001); N. Muirhead, "A Rationale for Individualized Hemoglobin Targets," Nephrology, Dialysis, Transplantation, 17 Suppl. 6, 2-7 (2002)) It is just too tempting for nephrologists to assume that what is most easily done -- keeping patients dragging along at a hemoglobin of around 110 -- is also what is best done.

Bill Peckham

It's appropriate for CMS to defer to FDA packaging, just as it's appropriate for CMS to defer to AAMI for water quality standards. The FDA approved label indicates that EPO can be safely used to maintain a Hgb between 10 and 12. If you want to change practice you'd have to change the label.

If the label were changed I would likely advocate for a reimbursement change.

roberta mikles

For me, I find it interesting that the Open-Door Forums were only made available to patients a few days prior to last comment day. This does not give patients time to digest and write a comment if they desire to do so. Recently, in numerous conversations with providers, the general comment I received, for the most part, was that patients do not want to be educated. Indeed, there are some that want to be as educated as possible, and then there are others who do not want to be educated. My suggested that is suppose to be brought forth to the ESRD Networks is the following (now remember, I was told this would be brought to the Networks attention, but I have no control if it is not).
The Networks, whenever there is a proposed rule, should immediately send information related to same to each unit. This can be faxed. The unit can them make copies and hand to patients. Patients can read, or not read. There should be information on the paper identifying the proposed rule in language that patients understand, and who to contact at the Network for further information. This was my suggestion and I hope that someone takes is seriously because patients, for the most part, in center, are not aware of any of this. And, for the facilities to post, yet another piece of paper, is a bit of not only being overhwhelming for patients but overkill with so many posters and papers on the walls as was in our unit. And unless, posters are explained, staff can not assume that which is posted is understood. Patients MUST be made aware of that which will affect their lives and must have time to respond to such as a public comment for a proposed rule. I also contacted CMS with my concerns that many patients were not made aware of such. So, whose reponsibilty is it to inform this vulnerable population? CMS? Networks. Let us not again leave the patients voice unheard.
If providers to inform patients, it must be a very objective viewpoint they provide and not form letters for patients to sign.

Roberta Mikles RN
Patient Safety Advocate

Anna Bennett

"For me, I find it interesting that the Open-Door Forums were only made available to patients a few days prior to last comment day."

Sorry Roberta, I don't quite understand. Am I confusing the proposal and call for comments with the open door? Bill wrote about the proposal on July 28th. Is the open door forum a different entity? (I have a lot to learn)

That question asked, I think that you bring up a great question about disseminating CMS information to patients. I think that it is input like yours that can help the system be better at communicating. CMS, the Networks and the units.

Bill Peckham

No you have it right Anna. My guess is that the open door forum was in response to the lack of comments from dialyzors. I saw it more as a last ditch effort to get people to engage.

I found it to be a hard sell - getting dialyzors engaged - and as I said even for me who read the rule and talked about it among various groups it was uninspiring.

Going forward CMS wanted input on getting this information to people on dialysis in a meaningful way, as it rolls out I think there will be a yearly rule making process so there will be other chance to take a bite of the apple.

Anna Bennett

CMS and dialysis are evolving. Sometimes, it does seem as though it is at glacial speed, but I think that the (fairly)new Quality Initiatives will be trying to engage more dialyzors.

It is an uphill battle - especially in this economy. First, it is trying to get understaffed/over stressed units to pass on information. We are in a bubble here on the internet, information is just a keystroke away for us but to the majority of those on dialysis and those who love them, the internet is just a word, not a daily pipeline of information and entertainment. Of course, that is changing. I do feel like I have seen and benefited from strides made in just the few short years that I have been active in the dialysphere. Now we need to try and get as many people on board as possible.

I think one of the biggest stumbling blocks for CROWNweb (the computer network that CMS is implementing for ALL dialysis units to do their reporting and communicating with the Networks) has been the lack of buy-in with the staff at dialysis units. It is simply another piece of technology that they have to learn - what employees can see as a nuisance, those who rely on the unit data dream about a day when there will be current, centralized and reliable data.

Roberta, we do need to reach more people. An engaged patient becomes a healthy dialyzor. (That is what we are advocating for)We'll never get to 100% But we are on the right path - those of us who can try to do something about it are engaging. Bill writes about it here at DSEN, and uses his public profile to advocate and sound the clarion call to all who listen. Roberta, you ask the questions in a public forum so that those working in the industry know that they are being watched. We are changing things. One keystroke at a time. Of course it does always feel like the clock is ticking.

Bill Peckham

It isn't so much a lack of buy in, as it is trying to roll out a deeply flawed program. It would be great if we had something that worked like CrownWEB is suppose to work. One of the problems with the proposed QIP is that the data will be old when people get it - I don't think in 2012 people will see the relevance of the unit's 2010 Total Performance Score.

One advantage of using the QIP to establish performance benchmarks (as determined through the TEP and NQF process) is that the benchmarks would be displayed with current lab values or prior period outcomes. The QIP could play an important role of putting people's current clinical performance measures into context. Display them in the context of best practices at each care meeting or even monthly.

I wonder if connected dialyzors have better outcomes? I'd like to think so ... that people who connect peer to peer online benefit clinically.

Anna Bennett

I am/was a prime example of a connected dialyzor benefiting from peer to peer connection. I joined the IHD forums when I had just started in center and by the time that I was transplanted, I was optimally dialyzing at home. Could that have happened if I had not known what was out there? Possibly, but it would have been far, far more difficult. I read more and more home hemo success stories on IHD every time I log on. It is heartwarming to say the least.

I see our government as being the ultimate non-profit. I really can't write about CROWNweb other than to say we need to work with what we have. Any multilevel bureaucracy will add to a delay in dissemination of data.

Just as you wrote about engaging dialyzors (an advocacy buy-in issue) we need to engage staff as well. One enlightened staff member has access to their shifts worth of patients. Teach a technician how to make proper buttonholes, and we could be one step closer to self care (or at least self cannulation). Teach a nurse how to enter patient data for immediate reporting, and we are one step closer to good, timely data. Teach a nephrologist that more dialysis is better (and available right here, right now), and they'll have healthier patients.

I may sound naive, but I see this as a grass roots movement. We need to make change where we can and hope that there will be a groundswell. I see the current quality based trends as a part of that groundswell and for that we need everyone on both ends of the needle buying in, engaged and seeing that life on dialysis can be a better quality of life simply by using technology that we have in place. If we start doing that, then the future can only get better.

roberta mikles

S0rry for the late response -- I sent the following to my Network, CMS, a provider-------------

When a proposed rule is open for public comment, or similar, that the Networks send a memo to those facilities in their area. The memo will then be copied, by the facility, and distributed to all patients in the unit.
The memo should state the following (1) proposed rule, where to locate online, and also an overview of the proposed rule in writing (this will cover those who have no computer access or computer skills), (2) date/time of Open-Door Forum (hopefully CMS will plan far enough ahead to allow beneficiaries to participate), (3) the Network phone number so that patients/families can call to obtain further information if such in a proposed rule is unclear, (4) where to send public comments and (5) public comment deadline. This memo should be sent to facilities as soon as the proposed rule goes into the Federal Register.

PATIENTS MUST BE INVOLVED and I am tired of hearing from some providers that patients do not want to be involved - this is just an excuse. There are patients out there that would welcome with open arms the opportunity to be involved and know what is going on that might affect them.. It is all about how information is presented, etc..


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