Renal Support Network Introduces New Resources to Address Data Challenges to Organ Donation

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Renal Support Network Launches New Tableau Dashboard to Educate and Connect Potential Living Donors with People Who Need a Kidney Transplant

“While it’s true for everyone that knowledge is power, for people who need an organ transplant, knowledge can be lifesaving,” says Lori Hartwell, RSN President and Founder and four-time kidney transplant recipient.

Today, Renal Support ­­Network (RSN) launched “Kidney Donations Save Lives,” a new resource designed for people seeking kidney transplants and people who want to learn about organ donation.

The new resource comes as the U.S. surpasses 1 million organ transplants, a milestone that comes at a critical time for Americans still desperately waiting for an organ. Kidneys are the organ that is most in demand. And navigating kidney donation can be daunting for prospective donors as well as for those who have kidney failure.

When people are seeking a kidney transplant, it can be difficult to find all the information they need to navigate their illness and the transplant process. RSN’s new Tableau dashboard, “Kidney Donations Save Lives,” makes it easier for patients, families, and friends to understand the options.

The user-friendly dashboard presents data about kidney transplants, on both the national and state levels. With an interactive map, people can click on their state to see information about each transplant center. The dashboard shows how many people are active on the waiting list in your geographical area, what type of solid organ donation transplants each center performs, and the number of kidney transplants done by each hospital.

“While it’s true for everyone that knowledge is power, for people who need an organ transplant, knowledge can be lifesaving,” says Lori Hartwell, RSN President and Founder and four-time kidney transplant recipient. “People on the transplant wait list need to know just because they are on the list, doesn’t mean that they are ‘active.’

Almost half of people on the list are ‘inactive’ due to follow-up tests required, the lack of a post-surgery caregiver, or a financial or medical issue they need to resolve before being put back on the ‘active’ list. RSN pairs the data with actionable ways to help people advocate for themselves to become ‘active' on the wait list.

The Tableau dashboard was created by four volunteers: Mark Shulman, Sarah Kerr, Cambria Brown, and Jared Sathaye. Together, they dedicated hundreds of hours to cleaning and connecting the data while working with the RSN team to present everything in a user-friendly format. The project held special personal meaning for Mark Shulman, a living kidney donor who spearheaded this project.

“To convey the importance of my upcoming kidney donation to my then 11-year-old son, I said, ‘If you could save your best friend Thomas by giving something you had two of, you would do it, right’,” said Mark Shulman, Kidney Donor and Senior Product Manager, Tableau at Salesforce. “Swaying my partner, required more convincing. I shared hard data about the procedure’s safety, near zero risk to my health, and the average hospital stay of only a few nights. The data helped her overcome her fear. It’s been nine years since I donated to my best friend and since then, I don’t even notice I’m missing a kidney. And I get the pleasure of seeing my best friend raise his family and not have to rely on a dialysis machine to live.”

“After my personal experience, it dawned on me that raising awareness about the criticality of donating an organ, whether during or after life, could only be addressed through a combination of hard data and wonderful human stories of generosity and resilience,” Shulman said.

Kidney transplants have a high success rate; they save lives, but awareness still lags, and need is soaring. The “Kidney Donations Save Lives” dashboard is designed to help people who want to know about the process, better understand the need, and see how lives are being saved by the generosity of others.

About Renal Support Network
Renal Support Network (RSN) is a nonprofit patient organization that was founded in 1993 by Lori Hartwell, a kidney disease survivor since 1968. RSN strives to help those who are newly diagnosed with CKD or on dialysis, as well as kidney transplant recipients. RSN’s goal is to empower people who have kidney disease to become knowledgeable about their illness, proactive in their care, hopeful about their future and make friendships that last a lifetime. Hartwell suffered kidney failure at the age of two, survived 50-plus surgeries and 13 years of dialysis, and is now living with her fourth kidney transplant. She knows from firsthand experience the difficulty of navigating the myriad emotions that arise from dealing with the disease, and the importance of being engaged in one’s own care.

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Suzette Maffi