AAKP will present a 1½-hour July 9, 2020 webinar on Clinical Trials: Expanding Opportunities for All Kidney Patients in the Midst of COVID-19 and Beyond. The webinar aims to ensure that all kidney patients are invited and encouraged to participate in clinical trials that are relevant to their situation. For more information and to register, see https://register.gotowebinar.com/register/7296799374118412557.
Network Provider Newsletters for Summer 2020 have been published. They include articles on:
- Network Support for COVID-19.
- The ESRD QIP.
- New QIP website interface.
- Staff Burnout.
- Patient Psychosocial Needs.
- NCC “Web Hub” for Patients (Network 16 only).
- Seeking Volunteers for Spanish-Speaking PAC (Network 18 only).
- Data Currency in CROWNWeb.
- Links to Network Patient Newsletters.
- Patient Emergency Preparedness.
- Interruptions in Service.
- KCER Newsletter.
- Staff Changes.
- Link to Events Calendar (Network 18 only).
- Network email Updates.
Find them at:
- Network 16: https://s3-us-west-2.amazonaws.com/nwrn.org/files/NL/16.Provider+Newsletter-++Summer+2020.pdf.
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 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/.
Donate Life Northwest remind us that February 14, 2020 is National Donor Day, and provides links to facilitate its celebration at https://mailchi.mp/donatelifenw.org/february-2020-donate-lifeline?e=d7486be0ed. This web page also provides information about their March 12, 2020 Volunteer Orientation course in Portland, their Fundraising Team for the April 24-26, 2020 Eugene Marathon, planned giving, and their Threads of Life quilting project (quilt squares are due February 17, 2020).
The Yale New Haven Health Services Corporation’s Center for Outcomes Research and Evaluation is convening a Technical Expert Panel (TEP) on Development of a Quality Measure Assessing Delay in Progression of CKD for CMS. Nominate yourself or others before January 13, 2020. Find details at https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/TEP-Currently-Accepting-Nominations#a1213, and download nomination forms from https://www.cms.gov/files/zip/development-quality-measure-assessing-delay-progression-chronic-kidney-disease-ckd.
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.
NKF and the Portland Kidney Group will host its Annual Holiday Party November 10, 2019 in Portland OR. Food and drinks will be provided, and family and friends are invited. The party will feature a dietitian talking about hearty but kidney-friendly holiday cooking. Volunteers are needed to help get everything ready. You’re asked to RSVP by November 4, 2019. Find more information on the Party, on volunteering, and on how to RSVP, at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG1119.pdf.
Just a reminder that the LA Kidney Walk will occur October 13, 2019 in Encino CA, and volunteers are welcome to help with setup on October 12. Kidney Walkers find sponsors to donate to help raise funds to support NKF’s many ways that they support kidney patients, providers, and research. The LA Walk is only 38% of the way toward their fundraising goal. Find full details at http://donate.kidney.org/site/TR/Walk/NKFServingtheWest?fr_id=9026&pg=entry.
The University of Michigan Kidney Epidemiology and Cost Center, under contract to CMS, is seeking dialysis patient and facility staff volunteers to provide feedback, via a half-hour phone call, on a draft of a short self-report questionnaire on patient life goals. They seek both patients with experience on HD, PD, or HHD, and clinical staff (nephrologists, nurses, dieticians, social workers). Those interested are asked to send a one-paragraph statement describing your interest and experience, to firstname.lastname@example.org by September 12, 2019.