There is a lot going on in the renal world, and you can be part of making your voice heard and making an impact on policy by joining the advocacy arm of the RSN, the Wellness & Education Kidney Advocacy Network or weKAN.
To learn a bit about our recent activity, go to our website Advocacy page at:
http://www.rsnhope.org/1weKAN/RSN_initiatives1.phpweKAN consists of “patient activists” from across the country whose common goal is to ensure that people with CKD continue to receive quality care. The organization promotes self-advocacy and self-determination by showing patients how to become actively involved in medical, regulatory, and legislative decisions affecting their lives. The weKAN patient activists, in turn, empower fellow patients to make informed decisions about their care.
weKAN is expanding the cross-section of patients capable of voicing their viewpoints in an informed manner, providing them with the education, platform, support—and, in some cases, employment opportunities—to do so. The result is a growing network of patient leaders who will be well-positioned to help when the predicted onslaught of patients with stage 5 CKD materializes within the next few years.
In light of dwindling resources, this help will take the form of patients helping patients with regard to understanding renal replacement therapy options, life-enhancement issues, the availability of community resources, pending regulatory and legislative issues, the importance of medication and dietary compliance, and so forth, as well as the provision of emotional support to patients and family members.
The following efforts continue to be competently implemented and/or addressed:
· Patient advocacy, providing support for legislation and regulatory issues that would be of benefit to kidney patients.
· Collaborative efforts, bringing together sectors of the community—professional and patient alike—in order to combine forces and not duplicate efforts in
pursuit of common objectives (e.g., maintaining and improving the quality of patient care).
· Patient education, providing print (e.g., Live & Give newsletter), electronic, and face-to-face communications to help patients advocate for their needs in
meeting the challenges of living with CKD.
· Mentoring opportunities, involving a cross-section of the patient population interested in helping other patients learn self-determination and self-advocacy to influence decision-making on the medical and legislative fronts.
· Speaking opportunities, allowing patients to share knowledge with other patients and healthcare professionals on how to initiate grassroots activities that would allow more patients to become involved in advocacy issues.
· Patient representation in industry-wide renal care coalitions, allowing the patients’ perspective to be heard and taken into account.
If kidney patients do not have a solid base from which to speak about their needs, it seems inevitable that governing bodies will continue to derail services and implement policies that may adversely impact patient care. With an active voice and increased knowledge, the weKAN patient activists will not only be able to advocate for themselves, but for the many thousands of patients destined to follow.
Please contact us if you are interested in participating by sending your info to
Info@RSNHope.org or calling
1-877-543-6353.
