Newswise — Renal Support Network, a national non-profit organization for people with chronic kidney disease (CKD), brought kidney community patient leaders together for a weekend meeting during the American Society of Nephrology's (ASN) Renal Week 2008 in Philadelphia this past week.
"Combining our leadership meeting with Renal Week presented an excellent opportunity for patient leaders to learn more about scientific breakthroughs and significant challenges facing the renal community," stated Lori Hartwell, President and Founder of the Renal Support Network and kidney patient survivor for over 40 years. "The goals of the RSN patient leadership meeting is to continuously educate these leaders for their strong role in advocacy and community outreach and to build consensus about the national agenda for the Renal Support Network in the coming year," she continued. Coming from all over the United States, the RSN participants attended Renal Week sessions and exhibits during their first two days in Philadelphia. Many noted that the conference was more concerned with the patient's viewpoint than they had expected, and all were impressed by the number of international healthcare professionals who attended and the expertise of the healthcare professionals available at the exhibits.
After attending the conference and exhibits, all participants felt more knowledgeable about the issues affecting not only kidney patients, but all healthcare professionals and providers as well. "I understand the compliance issues better. So many transplants and lives have been lost because of non-compliance, and it needs to be addressed. I was surprised to learn that Europe has more compliant patients than North America," said Sharon Pahlka, a Seattle resident who was on dialysis for 19 years. "I also think I am more aware of and interested in the global significance of kidney disease," she continued.
"The exhibits were fascinating to me," stated Pennsylvanian Diana Headlee-Bell, "I loved to see what was available to us as patients. Most were helpful and educational in their presentation, and I learned new values of some medications I was taking." Indianapolis resident Martinlow Spaulding, another of the RSN participants, felt welcomed by renal professionals and their interest in the patient's perspective. "At first they were surprised to learn that a patient would attend a professional meeting, but were very interested in what I had to say." "I enjoyed hearing about the dialysis of the future," stated Julie Siegel from St. Louis. That thought was seconded by Sherai Onibasa from California who said, "One of the most important things I learned about was the future of dialysis and innovations in the pipeline. I would like to learn more about overcoming the financial barriers to the patient."
Iowan Denise Eilers attended a session on patient adherence and said, "I was impressed that all four speakers in the session emphasized an attitude of patient-centered care as well as a team approach. As someone who has been in the community for four decades, I feel that this is a highly commendable change."
"I learned some new progressive ideas for advancing renal care such as the wearable kidney, the use of probiotics in pre-dialysis patients, and more advanced technology in PD treatment," stated Wendy Rodgers of Los Angeles. "But I would like to see more concern about the patient's point of view in renal care," she added.
A representative from the Centers for Medicare and Medicaid Services (CMS) met with several RSN patient participants, saying that she was delighted to meet such educated patients and was "extremely pleased" to see them discussing issues with the healthcare professionals at Renal Week.
"Renal Week was a wonderful learning and educational experience and RSN hopes to make this an annual event. I have always believed that if you involve patients educated about issues impacting the community, they can help develop solutions to improve the quality of life for fellow patients," said Hartwell.
Renal Support Network has developed several programs to encourage leadership in people with CKD, among them the PEPP Patient Speakers Program (Patients Educating Patients and Professionals) and weKAN (Wellness and Education Kidney Advocacy Network) which trains people to advocate for quality care for kidney patients. Local patient meetings throughout the United States are organized and run by kidney patients in order to inform and empower patients, their families and other healthcare professionals with current information about quality care and lifestyle issues for kidney patients. These meetings provide encouragement and support for patients and their families. The RSN websites receive 20,000 visitors monthly across the United States and throughout the world, providing a learning forum for all kidney patients through its interactive web site RSNhope.org, its KidneyTalk bi-weekly podcast, the online discussion forum KidneySpace.com with its live chatroom support group, and its health library KidneyTimes.com. RSN's philosophy of "Patients helping patients" is well-demonstrated in such patient programs as HopeLine (a peer support phone line), the Renal Teen Prom and the quarterly Live & Give newsletter written mostly by people who have kidney disease and their family members.
For more information about these and other programs, visit RSNhope.org, the web site of the Renal Support Network.
ASN is a not-for-profit organization of 11,000 physicians and scientists dedicated to the study of nephrology and committed to providing a forum for the promulgation of information regarding the latest research and clinical findings on kidney disease. For additional information about ASN, visit its website at http://www.asn-online.org.
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