Home Dialysis Central has published a new blog post on The Power of the Patient Voice that cites many examples of how influential the voices of patients have been in CMS policies and regulations, especially those around home dialysis. Find the post at https://homedialysis.org/news-and-research/blog/369-the-power-of-the-patient-voice. In it they mention the ESRD PPS Proposed Rule on Medicare coverage and regulations that CMS publishes every year, and that Home Dialyzors United will next month remind all dialysis patients of your right to comment, and how to do it. If you’d like to read ahead, find a link to the 2021 PPS Proposed Rule at https://nwrnbulletins.wordpress.com/2020/07/10/9-4-comments-due-re-proposed-changes-to-qip/.
In honor of National Kidney Month, AAKP Healthline will present a March 24, 2020 webinar on AAKP Ambassadors: Thriving with Kidney Disease and Inspiring Others. The program will feature current AAKP Ambassadors discussing “What I know now that I wish I knew when first diagnosed,” “Why it is important to be your own best advocate, and “How I am making a difference through AAKP.” For details and registration see https://aakp.org/programs-and-events/aakp-healthline/.
AAKP will celebrate their 50th Anniversary on December 7, 2019 by initiating their first AAKP Annual Fun Walk. The formal celebration will take place in Tampa Bay FL with a one-mile walk, music, exhibitors, and family fun activities, but you can celebrate by yourself or as a team wherever you are, nationally, globally, or virtually, by staging your own Fun Walk. For details see https://aakp.org/programs-and-events/fun-walk/.
AAKP’s Center for Patient Research & Education (https://aakp.org/center-for-patient-research-and-education/research/) is collaborating with the FDA to foster engagement with patients, caregivers, and patient advocates throughout the development, evaluation and surveillance of medical devices in order to gain insight from patients and caregivers about their experiences living with their diseases as well as experiences with medical devices intended to diagnose and treat their medical conditions. To further this effort, AAKP asks members to take a brief anonymous survey about the devices you have used. Find the survey at https://www.surveymonkey.com/r/GGTZNKX.
ESRD Network 16 is recruiting for new volunteers to serve on our Patient Advisory Committee (PAC). PAC members:
- Advise on Network education and outreach
- Assist with Network Quality Improvement Activity design and interventions
- Meet with Medicare (CMS) on conference calls to provide feedback from a patient perspective
Most PAC activities are conducted by phone call and email, though there are occasional opportunities for in person meetings. Any travel to in-person meetings will be funded by the Network.
Please share the Informational Flyer at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACFlyer1118.pdf, and the Application form at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACForm1118.pdf, with patients and care partners in Alaska, Idaho, Montana, Oregon, and Washington that might be interested. Application forms are due to the Network by November 26, 2018.
Donate Life Northwest is dedicated to helping transplant candidates maintain hope while waiting for an available matching kidney. They offer training to volunteers for various situations. Their upcoming training, volunteering, and celebration schedule includes:
- August 14, 2018 – School Speaker training in Portland OR
- August 15, 2018 – Volunteer Orientation in Bend OR
- August 16, 2018 – School Speaker training in Portland OR
- September 4, 2018 – Volunteer Orientation in Portland OR
- September 8, 2018 – Volunteer Opportunity in Vancouver WA
- September 8, 2018 – Donor Family Picnic in Salem OR
- September 13, 2018 – School Speaker training in Eugene OR
- September 13, 2018 – Volunteer Orientation in Eugene OR
- September 16, 2018 – Volunteer Opportunity in Portland OR
- September 23, 2018 – Volunteer Opportunity in Portland OR
- November 7, 2018 – Lifesavers Breakfast
For more details, see https://mailchi.mp/donatelifenw.org/sharing-hope-this-summer. This web page also introduces their new Latino Outreach Coordinator, Donor stories in English and Spanish, winners of their recent raffle, and information on including Donate Life Northwest in your estate, insurance, or financial plans.
Recordings of the 43rd AAKP National Patient Meeting, held June 8-10, 2018 in St. Petersburg FL, are now available online, at https://www.youtube.com/channel/UCwT_eU7vwGtHSapN8PKc-Hw. Sessions include:
- Assessing Dialysis Facility Quality: CMS Engagement of Kidney Patients
- Innovations in Kidney Disease Care
- Paving the Way for a Better Tomorrow: Understanding Clinical Trials
- Improving Kidney Care and Treatment Options – NIH Kidney Precision Medicine Project
- Innovation, Patient Focus and Care Improvement – Veterans Administration Leadership in Kidney Care
- Nutrition 101: Understanding & Enjoying Your Kidney-Friendly Diet
- Patient-Centered Kidney Disease Care: How to Change the Status Quo
HealthInsight ESRD Network 18 will hold their 2018 Quality Conference July 16, 2018 in Los Angeles. Topics will include preserving renal function, emergency preparedness, cultural awareness and sensitivity, patient engagement and advocacy, the impact of dialysis, and CROWNWeb. Five CEs will be provided. Find details and register at http://www.esrdnetwork18.org/ or http://events.r20.constantcontact.com/register/event?oeidk=a07efdferr9f760399d&llr=gfuz7mxab.
CMS has contracted with UM-KECC to develop one or more measures related to the quality of care provided to ESRD dialysis patients by physicians, and is recruiting transplant and dialysis patients to serve on the Technical Expert Panel that will propose such measures. Nominations are due by January 5, 2018. For details see https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/TEP-Currently-Accepting-Nominations.html#001.
Network 16 is seeking volunteers – patients or care partners – to represent the Network on two national committees:
ESRD National Coordinating Center’s Patient and Family Engagement Learning & Action Network:
- Volunteers are asked to commit to participating in scheduled conference calls and webinars, usually every month or every other month
- Centers for Medicare & Medicaid Services (Medicare) representatives are on the calls, providing an opportunity for volunteers to work closely with the federal government to improve patient care
- The patient representative with the highest level of participation (attendance) gets to travel to Baltimore for a national meeting of the committee
- Learn more about the committee at http://ncc.hshapps.com/en/patients/national-patient-and-family-engagement-lan-npfe-lan/.
- We need one patient from Idaho, and one from Montana
Kidney Community Emergency Response Coalition (KCER): This is a national group devoted to improving emergency preparedness and response for kidney patients and ESRD facilities. This involves quarterly conference calls. Learn more about the Coalition at http://www.kcercoalition.com/. We need two patients from any Network state – Alaska, Idaho, Montana, Oregon, or Washington.
Anyone interested should email Lisa Hall at LHall@nw16.esrd.net or call 206-923-0714.