AAKP will hold their 45th annual National Patient Meeting online September 11-12, 2020 on the theme Patient Voice – Patient Choice. Registration to the virtual event is free this year. Find more information and register at https://aakp.org/2020-national-patient-meeting-2/.
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/.
ESRD Networks 16 and 18 have prepared their Summer 2020 patient newsletters. Major articles and sidebars for summer include:
- COVID-19: a New World for Dialysis Patients.
- Telehealth: How to connect virtually with your healthcare providers.
- Are you up to date on all your vaccines?
- How to Report Patient Grievances.
- How to Get Our Newsletter! and Join Our Blog!
- Introduction to The KidneyHub.org Mobile Tool (Network 16).
- Invitation to Get Involved! in helping the Network improve patient care (Network 18).
Find Network 16 patient newsletters, in English and Spanish, at https://nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html.
Find Network 18 patient newsletters, in English and Spanish, at http://www.esrdnetwork18.org/patients/newsletters/.
The ESRD NCC will present a June 2, 2020 Patient Town Hall on You Too, Can Manage Transplant. Patients will share their experience with pre-transplant preparation, recovery, and adjusting to life after receiving a transplant. For details see below:
CCCC will present a May 18, 2020 webinar on Empowering Patients as Palliative Care Ambassadors: Experiences, Tips and Templates presented by CCCC’s ePatient Ambassadors. Find more information and register at https://mailchi.mp/coalitionccc.org/no-one-should-die-alone-on-the-street-746028?e=67e1ad4c31.
AAKP is asking dialysis patients to take a survey on their experience with and concerns about COVID-19. AAKP’s introduction follows:
“AAKP works closely and constructively with Federal and state officials on health issues of concern to both the general public and those who are immunocompromised – like kidney patients. As we have in the past with flu and vaccines, we are interested in relaying your insights about the Coronavirus to relevant officials so that their actions and communications are better informed and responsive to your concerns. As a dialysis patient, has the Coronavirus impacted your thinking or behavior? What communication, if any, have you, as a dialysis patient, received with your healthcare team and/or dialysis facility? TAKE A FEW MINUTES, TELL US YOUR THOUGHTS! AAKP will share insights gleaned from you with the brave medical and scientific professionals fighting the Coronavirus! … Answers and any comments provided will not be attributed to any individual – the FLASH SURVEY is completely anonymous.”
Find the survey at https://www.surveymonkey.com/r/DialysisandCoronavirus. They do not indicate how long the survey will be available.
In Blurred Lines: Keeping Safe Boundaries at a Dialysis Clinic, Lori and Network 18 Patient Services Director Eileen Rhodes discuss the problems that can arise when patients and staff become friends. Find this recorded podcast at https://www.rsnhope.org/kidneytalk/blurred-lines-keeping-safe-boundaries-at-a-dialysis-clinic/.
Previous podcasts can be found at https://www.rsnhope.org/, along with information about the Renal Support Network’s Annual Teen Prom, Annual Essay Contest, Monthly Support Group Meetings, Public Speaking Training, KidneyTalk Magazine, HOPEline Peer Support Hotline, KidneyTalk Blog, Renal Recipes, and the many other services RSN provides for ESRD patients.
We’ve published our Patient Newsletters for Winter 2020. They feature articles on treatment options, flu shots, grievances, access to care, how to stay informed by the Network, and how to help the Network improve patient care. Find them at:
- Network 16 in Spanish: https://s3-us-west-2.amazonaws.com/nwrn.org/files/N2/Win2020NW16PNLEsp.PDF.
November 1, 2019 is the registration deadline for the November 8 CNSW NW Chapter Fall 2019 Educational Conference in Issaquah WA. Ignore the earlier deadline on the Conference brochure (https://s3-us-west-2.amazonaws.com/nwrn.org/files/CNSW/CNSW_Fall.2019.pdf), and use the registration form at https://s3-us-west-2.amazonaws.com/nwrn.org/files/CNSW/CNSW.REG.Fall.2019.pdf to RSVP. Conference topics include ethics, mental health, end of life, patient support, patient engagement, and patient collaboration, with 6.5 CEUs offered.
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.