** Speak Up and Be Heard ! **

Mark Neumann is one of the more enlightened people in the world of CKD.

Getting the (unified) message out
1/21/2009 3:42:34 PM

Nephrology News & Issues
by Mark E. Neumann

Imagine yourself with a company that has contracts with hundreds of service organizations. The contracts are maintained and funded by a reliable source, and the service requirements are well established. As the customer, you have the ability each year to access the services provided and make changes to the contract.

That scenario is a good description of the End-Stage Renal Disease program. And "yourself" is the recipient of the care: the patient. Over a quarter million strong.

Of course, it's not that simple. But patients have more control over the process than they believe. They are the customer, and they do have, with the proper education and knowledge, the ability to judge the quality of service being provided and make changes. They have a reliable payer for those services. Medicare, which is funded by everyone in this system-patients, staff, dialysis facility owners-and those who administer the Medicare program themselves. We all have a vested interest in making sure that Medicare pays for quality care, because we are all paying for that care.

But the patient has a greater interest, because he or she is the recipient of the therapy-and has to deal with the after effects if trained professionals do not provide quality care. I won't go home tonight feeling the effects of a poor dialysis treatment, bad management of my anemia, or poor needle sticking. But some patients will.

If patients do, in fact, manage this "company," how can they change things? We know patients have political clout: Renal providers and advocacy groups have helped patient organizations fund "fly-ins" of patients to Capitol Hill in support of legislation, like the Kidney Care Quality and Improvement Act or composite rate increases. Lawmakers listen to patients.

Aside from having the ear of legislators, patients have the ear of the payer of their care-Medicare. The recently approved Conditions for Coverage give patients an opportunity to be more involved in their therapy. But they have to step forward and demand a seat at the table.

Organizations create opportunities to get involved

To be sure, there are several organizations in the United States that offer individuals with kidney disease an opportunity to get involved. Web sites provide educational materials and an opportunity to voice your opinion. Bill Peckham, who calls himself a "dialysor" and prefers that moniker over the label of patient, writes fresh blogs almost daily for his "Sharp End of the Needle" column. Renal Support Network offers a multitude of opportunities for patients to get involved on the grass roots level of patient advocacy. Dialysis Patient Citizens suggests visitors to its Web site should "improve our lives through empowerment." Other organizations, such as the American Association of Kidney Patients and the National Kidney Foundation, offer educational materials and webinars (just recently, the NKF hosted a call-in for patients and families who wanted to get a better understanding of the Conditions for Coverage. Good idea.)

Is there a better way to consolidate and organize these efforts with a unified approach? CMS has supported-and dialysis providers have funded-18 End-Stage Renal Disease Networks to help serve as the liaison between government and the provider. What about one more: 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.

The management team would comprise leaders from all the patient organizations, and expertise would be funneled to each of those services. Instead of two or three organizations offering educational materials or organizing fly-ins, the Network would streamline those tasks, develop uniform educational products, and offer position statements that represent the patient community as a whole.

One well-managed, well-focused organization that can rally thousands of patients on important issues impacting renal care can deliver a unified message-and make a difference.
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Mr. Neumann has been the executive editor of NN&I since 1989.

http://nephronline.com/features.asp?F_ID=409