ADVOCACY
Advocacy
National Patient and Family Engagement Learning and Action Network (NPFE-LAN)
Member - January 2019 - Present
The NPFE-LAN is a partnership between patients, family members, caregivers, and dialysis providers. It is a vehicle for bringing the patient voice to the kidney community that creates opportunities for in-depth learning, problem-solving, and achievement of patient-driven goals for quality improvement at the national level. In the NPFE-LAN, patients, family, and caregivers are the subject matter experts (SMEs) who drive change across all Networks and dialysis facilities, helping to solve shared problems on a large scale.
In the NPFE-LAN, SMEs share their stories, ideas, and perspectives on how to improve the way things work at the facility level so patients receive better care. An SME is an expert who knows what it is like to live with kidney disease, and is willing to share his or her experiences to improve the quality of care for all kidney patients. Patients, family members, and caregivers serve as SMEs.
National Patient and Family Engagement Learning and Action Network (NPFE-LAN) Affinity Group
Subject Matter Expert - Transplant, January 2019 - Present
The NPFE-LAN has four separate small groups, called Affinity Groups, focused on specific areas of dialysis and transplant care. The groups meet monthly by webinar (phone and/or computer) to share experiences and discuss ways to improve the quality of care for kidney patients and meet the Centers for Medicare & Medicaid Services (CMS) quality improvement goals. Read below to see what the NPFE-LAN is accomplishing this year.
Quality Insights Renal Network 5, Patient Advisory Committee (PAC) [Network 5 Includes the District of Columbia, Maryland, Virginia, and West Virginia]
Member, November 2018 - Present
Quality Insights Renal Network 5 is a nonprofit corporation which serves as the federal contractor for the Network 5 region, which encompasses Maryland, Virginia, West Virginia, and the District of Columbia. There are over 418 hemodialysis facilities and 12 renal transplant centers in the area, providing treatment to more than 23,000 dialysis patients and over 9,000 transplant recipients (2010 Annual Report, ESRD Network 5).
The activities of Quality Insights Renal Network 5 are under the direction of an 11-member Board of Directors. As the governing body of the Network, the Board assists in the development of goals, objectives, and general policies relating to all aspects of Network operations. A 19-member Medical Review Board (MRB) directs Quality Insights Renal Network 5's quality measurement, monitoring, and management initiatives. The MRB identifies Network-wide and facility-specific opportunities for improvement through routine monitoring of data profiles and pattern analysis. The 11-member Patient Advisory Committee made up of patient representatives from all geographic areas and dialysis modalities within Network 5, serves to keep Network staff abreast of current patient issues and provide a patient perspective for Network projects and tasks
Quality Insights Renal Network 5, Patient Advisory Committee (PAC)
[Network 5 Includes the District of Columbia, Maryland, Virginia, and West Virginia]
Subject Matter Expert (SME) - Home Dialysis, November 2018 - Present
Quality Insights Renal Network 5 (QIRN5) is conducting a Home dialysis Quality Improvement Initiative to promote home dialysis therapies to all eligible ESRD patients in the Network 5 service area. This project aims to reduce disparities in the promotion of access to home dialysis.
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United Network for Organ Sharing (UNOS)
Ambassador, July 2016 to Present
The UNOS Ambassador program provides tools, tips, and resources to help you spread awareness of United Network for Organ Sharing’s life-saving mission in your community.
Unos Ambassadors generate awareness about UNOS, organ donation and transplantation by:
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Share stories and connections to transplantation and donation with friends, co-workers, and neighbors
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Set up an awareness display at a local school or place of worship
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Participate in a community health fair and/or fundraising event
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Learn more and share information about transplant trends
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Show your support by giving to UNOS
American Kidney Fund (AKF)
Kidney Health Educator/Advocate/Volunteer, May 2018 – Present.
Kidney Health Coach
Kidney Health Coach is the American Kidney Fund’s FREE community health education program. The online Kidney Health Coach training course contains the most up-to-date information about preventing, managing, and treating kidney disease, as well as living a healthy lifestyle.
Advocacy Network
The American Kidney Fund advocates for policies to improve the health of millions of Americans and their families who are living with or are at risk of developing kidney disease. Our Advocates make their voices heard on Capitol Hill and in their communities, spreading awareness of kidney disease and empowering those at risk to live healthier lives.
Volunteer
AKF offers free health screenings, kidney health education sessions and follow-up services (including medical referrals and public education materials). These services are provided at a variety of venues including churches, expositions and festivals, dialysis centers, community centers, colleges, and corporate offices. Similarly, volunteers are needed in a variety of roles.