Network 19, the Patient Network

By Bill Peckham

Mark at NephrOnline seconds Gary Peterson's call in New Views to "embed a national patient organization in its [CMS's] policy making." In Getting the (unified) message out Mark writes:

What about one more [ESRD Network]: Network No. 19-the Patient Network. This network, funded by CMS, would bring together under one roof patient advocacy, patient education, patient services-such as mediating patient/provider issues-legislative efforts and lobbying, and involvement on dialysis provider regulations.

I think this would be very helpful. The recent example with CROWNWeb illustrates that we need a diversity of voices advocating with CMS and Congress. The Kidney Care Partners have representation from patient organizations (just as they have representation from small dialysis organizations) but their advocacy is geared towards the enactment and implementation of legislation. What a Network 19 would allow, is a focus on the ESRD's program goals, a high altitude view to guide the chase for optimal dialysis rather than always being down in the weeds struggling over the tactics of incremental reform implementation.

Mediating patient/providers issues is an area where a Patient Network could do a better job filling a role that is a fraught with tough situations. Mediating patient/provider issues is heavy lifting, a job that could be supported by the existing patient advocacy groups under the Network 19 umbrella. A Patient Network and its partners charged with both education and representing the patient's point of view could help Medicare beneficiaries feel like the educated business customer in Mark's analogy (to extend the analogy: Network 19 would be like a venture capitalist invested in and mentoring half a million start ups (the patients)). It could work.

We need to hear from the existing patient groups, the ones that would need to find a place under this Network 19 umbrella.

Comments

[Roberta Mikles]

A Patient Network would be great. Actually, fantastic. I would suggest that patients be recruited (and/or their significant others)to participate. Although the provider-supported patient groups are effective in certain areas, we need to include patients who are not part of these groups. There are many patients who have experienced negative situations. These patients can be instrumental in changing the system. I, and, many, believe that the status-quo patient organizations have not truly supported improved care - that related to ongoing oversight and enforcement of Conditions. The QA committee and new Conditions will not fully replace an inspection that identifies incorrect practices that result in potential or actual harm. This Patient Network needs to be independent of providers. Not to single out one group, but it is my understanding that such groups as Davita Patient Citizens has never lobbied, etc., for improved oversight e.g. inspections. This is just an example, imho. We are all aware that when a group is supported (financially, or otherwise) by providers, that often the goals are different than a non-supported provider group. Reality. CMS and the State Survey Agencies have not done what they set out to do - inspect facilities to identify and correct those situations that cause potential harm. We continue to see avoidable errors in survey findings.

Roberta Mikles, RN, Director, Health Care Patient Advocates - uncompensated advocates striving for quality safe care for all patients - all health care settings.
RMiklesRN@aol.com

[Bill Peckham]

Hi Roberta, I thought you'd like the idea of a Network 19 for just the reasons you listed. I think the first job would be to articulate how the current system comes up short - or in what situations the current system comes up short.

And to do it from the point of view of the dialyzed, from the point of view of the beneficiaries in Medicare-speak. There is a dynamic at work among the existing organizations, a dynamic of limited funds and unlimited needs. What they do is needed but there is much more to do.

Network 19 could bring resources to bear on needs that are currently unfunded.

[Zach]

Here, here!

[Rich Berkowitz]

Bill, I know we discussed this a little while ago and it's something I'd like to see happen. It seems all of the other kidney patient groups either focus on other RRT's than dialysis or seem to be encumbered to corporate interests. My hope is that a District 19 could operate independently. However, since the organization still would potentially be topdown in the aspect of where the funding would flow from and how it would be organized, I would hope the patients involved would try to take ownership and make it known they should be the dominant stakeholder. This could be a boon to a changing dialysis environment in the U.S.

[Roberta Mikles]

Bill, I agree. Please feel free to call upon me to help. I am available to support this endeavor.
The bottom line is that which Rich stated. INDEPENDENT---

We must keep in mind the reality that in some units 'retaliation', either covert or overt, is still alive and well... but, not well for the patient. Many patients can contribute with much need information, however, due to still-existing fear of speaking up, there is resistance. I still get calls from patients in this situation. It is these patients who can provide that needed information that will improve delivery of care.

I would like to think that providers would welcome, with their open arms, a patient group that is INDEPENDENT and not comprised of selected patients or focused at only one area as reimbursement.

Again, Bill, I am here to support this and help in any way I can.
Roberta Mikles, RN
uncompensated Patient Advocate, RMiklesRN@aol.com

[Zach]

What is (are) RRT's?

One of the first steps in patient empowerment is to understand the vocabulary.

[Rich Berkowitz]

RRT is Renal Replacement Therapy such as dialysis and transplantation.

[Zach]

Simple enough. Thanks Rich. :)