First Word

Understanding what the ‘customer’ wants in kidney care

Last month, I wrote in my First Word column about the value of patient-caregiver time in kidney care. Chronic illness like ESRD needs a lifetime of support; the biomedical process of removing toxins from the blood is a small portion of what it takes in helping patients cope with kidney failure.

Just as important as caregiver time is giving patients a voice in how their treatment is provided. Patients are customers of medical care. They should be informed and have opportunities to offer feedback on the services they receive.

During the last few months, we have seen a change in the influence of “patient power.”

KidneyX: The CMS-directed Kidney Innovation Accel- erator, or KidneyX, puts an emphasis on bringing patients to the workbench to help develop dialysis technology of the future. If we are to build a wearable kidney, for example, how does the patient want it to look and feel? What makes the best vascular access? What types of things do users need to do each day that have to be accounted for in designing the hardware? What clinical data are important as they make sure they are getting adequate dialysis?

Mark E. Neumann

Researchers and engineers can build the product; patients should have their “approved by” stamp on it.

The voice: Viewpoints from patients are now appearing in a prominent position in major clinical nephrology journals, and patients are being invited to share their views at professional meetings. Last month, David White, a transplant patient on the board of the Kidney Health Initiative, wrote a preview for our special supplement, “A Nephrologist’s Guide to Kidney Week” of his presentation planned for the American Society of Nephrology Annual Meeting. The mission of the initiative, with board members that include patients, members of industry and kidney care professionals, is to “advance scientific understanding of the kidney health and patient safety implications of new and existing medical products and to foster development of therapies for diseases that affect the kidney ... ” The group wants to work with the FDA in the evaluation of drugs, devices, biologics and food products used by patients with ESRD.

In his article, White wrote, “An overhaul in kidney care is long overdue, and those who stand to benefit the most – people living with kidney diseases – should have an opportunity to define the future state of kidney care.” This is a group of more than 500,000 patients – their voices need to be heard.

Give the patient control

For kidney care, patients in the later stages of CKD can start thinking about modality options and that can also include conservative care. A choice of “no dialysis” or withdrawing from dialysis is a treatment option. Our Cover Story this month by Alvin H. Moss, MD, begins a series of articles in Nephrology News & Issues about the value of supportive care.

“To transform the culture of ESRD patient care to one that is more patient centered, nephrologists have been encouraged to become more engaged with their patients and be willing to listen, make time, go beyond their job description, re-imagine what it means to provide ‘good’ care and see value in relationship building with their patients and families,” Moss wrote.

Along those lines, the National Kidney Foundation announced on Oct. 11 that it was partnering with Tufts University to launch of a 3-year project to help older patients with advanced stages of kidney disease and their family care partners make decisions based on their goals and care preferences. The project, Promoting Autonomy and Improving Shared Decision-Making for Older Adults With Advanced Kidney Disease, is funded through a Patient-Centered Outcomes Research Institute award.

Rate your stay

Lastly, is the dialysis experience itself. Consumers have Trip Advisor, Yelp! and other sources to vent about dirty hotel rooms and poor service. Patients on dialysis, already faced with limited opportunity to choose their clinic because of physician practice and joint venture agreements, need to be able to provide feedback about the care they receive. CMS now mandates dialysis providers offer the Consumer Assessment of Healthcare Providers and Systems-In-Center Hemodialysis Survey to adults with ESRD, but the survey is not patient friendly. Yet, under quality measure review put in place by CMS, dialysis providers will be evaluated by the dialysis experience, partly based on the survey results.

Let’s have patients sit down with kidney professionals and write a survey that addresses patient issues and provides valuable feedback to providers. That is the best way to give customers what they want.

Last month, I wrote in my First Word column about the value of patient-caregiver time in kidney care. Chronic illness like ESRD needs a lifetime of support; the biomedical process of removing toxins from the blood is a small portion of what it takes in helping patients cope with kidney failure.

Just as important as caregiver time is giving patients a voice in how their treatment is provided. Patients are customers of medical care. They should be informed and have opportunities to offer feedback on the services they receive.

During the last few months, we have seen a change in the influence of “patient power.”

KidneyX: The CMS-directed Kidney Innovation Accel- erator, or KidneyX, puts an emphasis on bringing patients to the workbench to help develop dialysis technology of the future. If we are to build a wearable kidney, for example, how does the patient want it to look and feel? What makes the best vascular access? What types of things do users need to do each day that have to be accounted for in designing the hardware? What clinical data are important as they make sure they are getting adequate dialysis?

Mark E. Neumann

Researchers and engineers can build the product; patients should have their “approved by” stamp on it.

The voice: Viewpoints from patients are now appearing in a prominent position in major clinical nephrology journals, and patients are being invited to share their views at professional meetings. Last month, David White, a transplant patient on the board of the Kidney Health Initiative, wrote a preview for our special supplement, “A Nephrologist’s Guide to Kidney Week” of his presentation planned for the American Society of Nephrology Annual Meeting. The mission of the initiative, with board members that include patients, members of industry and kidney care professionals, is to “advance scientific understanding of the kidney health and patient safety implications of new and existing medical products and to foster development of therapies for diseases that affect the kidney ... ” The group wants to work with the FDA in the evaluation of drugs, devices, biologics and food products used by patients with ESRD.

In his article, White wrote, “An overhaul in kidney care is long overdue, and those who stand to benefit the most – people living with kidney diseases – should have an opportunity to define the future state of kidney care.” This is a group of more than 500,000 patients – their voices need to be heard.

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Give the patient control

For kidney care, patients in the later stages of CKD can start thinking about modality options and that can also include conservative care. A choice of “no dialysis” or withdrawing from dialysis is a treatment option. Our Cover Story this month by Alvin H. Moss, MD, begins a series of articles in Nephrology News & Issues about the value of supportive care.

“To transform the culture of ESRD patient care to one that is more patient centered, nephrologists have been encouraged to become more engaged with their patients and be willing to listen, make time, go beyond their job description, re-imagine what it means to provide ‘good’ care and see value in relationship building with their patients and families,” Moss wrote.

Along those lines, the National Kidney Foundation announced on Oct. 11 that it was partnering with Tufts University to launch of a 3-year project to help older patients with advanced stages of kidney disease and their family care partners make decisions based on their goals and care preferences. The project, Promoting Autonomy and Improving Shared Decision-Making for Older Adults With Advanced Kidney Disease, is funded through a Patient-Centered Outcomes Research Institute award.

Rate your stay

Lastly, is the dialysis experience itself. Consumers have Trip Advisor, Yelp! and other sources to vent about dirty hotel rooms and poor service. Patients on dialysis, already faced with limited opportunity to choose their clinic because of physician practice and joint venture agreements, need to be able to provide feedback about the care they receive. CMS now mandates dialysis providers offer the Consumer Assessment of Healthcare Providers and Systems-In-Center Hemodialysis Survey to adults with ESRD, but the survey is not patient friendly. Yet, under quality measure review put in place by CMS, dialysis providers will be evaluated by the dialysis experience, partly based on the survey results.

Let’s have patients sit down with kidney professionals and write a survey that addresses patient issues and provides valuable feedback to providers. That is the best way to give customers what they want.