The University of Michigan KECC is conducting an ESRD Patient Reported Outcomes Quality Initiative Project Patient Life Goals Study, and seeks dialysis patients at least 18 years old to answer a new Survey that asks about your individual life goals and your dialysis facility care team. Life goals are personal goals that you think are important to achieve, such as having the ability to go to work, go to school, travel, or spend time with family. The Study aims to improve the odds that your care team will consider your individual life goals in the treatment planning process. Find an introductory letter and the Survey at https://redcapproduction.umms.med.umich.edu/surveys/index.php?s=DT4N3P48AC. There’s an easy-to-miss check box at the bottom of this page, which you have to check before the Survey questions appear. The Survey doesn’t seem to specify an expiration date.
A number of organizations are hosting weekly webinars on COVID-19. These include:
- ESRD NCC half-hour “Quickinars” for providers and patients. Find more information, recordings of past Quickinars, and register for current presentations at https://esrdncc.org/quickinars:
- Tuesday May 26, 2020 patient Quickinar on Combating Uncertainty and Fear in the COVID-19 Era (En Español), presented by a PD patient, Network Ambassador, and patient and family engagement SME. She will share how Spanish-speaking patients are coping with fears surrounding COVID-19, and Provide links to COVID-19 information in Spanish.
- Wednesday May 27, 2020 provider Quickinar on COVID-19 Communication – Quick Tips to Connect, presented by the Director of Outreach and Development for the non-profit Academy of Communication in Healthcare, Editor-in-Chief for the Journal of Patient Experience, and Assistant Clinical Professor at Vanderbilt University School of Medicine.
- Coalition for Supportive Care of Kidney Patients half-hour of Open Discussion for Professional Providers Wednesday May 27, 2020 – see https://nwrnbulletins.wordpress.com/2020/04/01/4-1-weekly-staff-support-calls/.
- CMS Stakeholder Engagement Call for Dialysis Providers Wednesday May 27, 2020, call 833-614-0820, passcode 6152699, audio webcast link https://engage.vevent.com/index.jsp?eid=5779&seid=2123#/main/simplify.
- They also offer Tuesday May 26, 2020 “Office Hours” for general Medicare questions, and Lessons from the Front Lines on Friday May 29, 2020. For details, including recordings of past events, see https://nwrnbulletins.wordpress.com/2020/04/20/4-21-cms-shareholder-engagement-calls/.
- This week’s Wednesday May 27, 2020 Coalition for Compassionate Care of California hour-long COVID Conversations is dedicated to Skilled Nursing facilities; see https://mailchi.mp/coalitionccc.org/no-one-should-die-alone-on-the-street-746076?e=67e1ad4c31. For weekly details and registration, recordings of past events, and additional resources, see https://coalitionccc.org/covid-conversations-education/.
A number of organizations are hosting weekly webinars on COVID-19. These include:
- ESRD NCC half-hour “Quickinars” for providers and patients at 2 pm PDT. Find more information, recordings of past Quickinars, and register for current presentations at https://esrdncc.org/quickinars:
- Tuesday May 19, 2020 patient Quickinar on Caregiving During COVID-19: Tips from Kidney Caregivers, presented by a caregiver and a Network Patient Services Director.
- Wednesday May 20, 2020 provider Quickinar on What to Do and Say to Support Psychological Safety During the COVID-19 Pandemic, presented by a nurse who uses “a human-centered co-design approach [as] she works with healthcare leaders to generate flourishing cultures and exceptional outcomes by integrating patient/family experience, quality, safety, and joy in work.”
- Coalition for Supportive Care of Kidney Patients half-hour of Open Discussion for Professional Providers at 11:30 am PDT Wednesday May 20, 2020 – see https://nwrnbulletins.wordpress.com/2020/04/01/4-1-weekly-staff-support-calls/.
- CMS Stakeholder Engagement Call for Dialysis Providers at 2:30 pm PDT Wednesday May 20, 2020, call 833-614-0820, passcode 3287645, audio webcast link https://engage.vevent.com/index.jsp?eid=5779&seid=2117#/main/simplify. The bare registration portal, and the email verifying your registration, appear to be named “Lessons COVID Dialysis.”
- They also offer Tuesday May 19 and Thursday May 21, 2020 “Office Hours” for general Medicare questions, and Lessons from the Front Lines on Friday May 22, 2020. For details, including recordings of past events, see https://nwrnbulletins.wordpress.com/2020/04/20/4-21-cms-shareholder-engagement-calls/.
- Coalition for Compassionate Care of California hour-long COVID Conversations on CCCC Decision Aids, Ventilators, CPR, Transfers, And Comfort Care – noon PDT Thursday May 21, 2020. For weekly details and registration, recordings of past events, and additional resources, see https://nwrnbulletins.wordpress.com/2020/04/12/4-15-cccc-covid-conversations-webinars/.
NKF will present a May 2, 2020 half-day series of five webinars for patients on current kidney-disease topics called Virtual Education Series: Connect, Learn, and Share. You can choose any or all of the 30- to 45-minute sessions, and they’ll be recorded for later viewing. The topics are:
- Coping with a Chronic Illness: Dealing with Emotions and Finding Support
- Tips for Kidney Friendly Eating on a Budget
- Fitness and Kidney Health
- Telemedicine 101: What to Expect When Seeing Your Doctor at Home
- Let’s Talk about Transplant: Real Patient Stories
Each webinar will be co-led by a healthcare professional and a patient. Find more information and register at https://www.kidney.org/events/local-event/virtual-education-series-connect-learn-and-share.
RSN KidneyTalk has published two new podcasts on:
- COVID-19 and Staying out of the Hospital discusses the most common causes of hospitalization in people requiring dialysis and what to do to stay safe. Find it at https://www.rsnhope.org/kidneytalk/covid-19-and-staying-out-of-the-hospital/.
- Maintaining Emotional Balance in an Unbalancing Time looks for the right words for dialysis clinic personnel when people are suffering from loss, and describes coping mechanisms to help alleviate anxiety and make tough life decisions. Find this one at https://www.rsnhope.org/kidneytalk/maintaining-emotional-balance-in-an-unbalancing-time/.
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.
NKF and Swedish Medical Center will present an April 25, 2020 four-hour workshop on Lifestyle & Kidney Health: Diet, Exercise, Weight Loss and Beyond. Topics will include nutrition, diabetes, blood pressure, fitness, and transplant preparation. Lunch will be provided. See below for full details:
The Renal Support Network has published a podcast called Keep on Believing, featuring an interview with America’s Got Talent superstar and kidney transplant recipient (at age 4) Angelica Hale. Angelica advises, “Never give up and keep on dreaming. Keep on believing in yourself. No matter what you are going through, you can still achieve your dreams and reach your goals.” Find the podcast at https://www.rsnhope.org/kidneytalk/keep-on-believing/.
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.