NW16 11/26 Recruiting Patient Advisory Committee Volunteers

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.

NW16 11/11 NKF/PKG Holiday Party

NKF and the Portland Kidney Group will hold their Annual Holiday Party on November 11, 2018.  Light kidney-friendly food and drinks will be provided, so you need only bring your family, your friends, and your appetite.  However, please RSVP before November 4 with the number of people you expect to bring, so an appropriate amount of food can be stocked!  A renal dietitian will talk about hearty but kidney-friendly holiday cooking.  Volunteers to help with the Party will be welcomed.  Find all the details you’ll need at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG.Holiday.Party.2018.pdf.

NW16 4/19+ Portland Kidney Walk/Run

Mark your calendar for the Tabor Trot fun walk/run and gathering the morning of May 26 at beautiful Mt.Tabor Park on the Saturday before Memorial Day.  See past photos, video, more information, and register at http://www.tabortrot.com/.  We’ve already posted information on other Donate Life Northwest events in Portland (April 22, May 7) and Medford OR (April 11-15); for details see our Patient Calendar at the link above.  Donate Life Northwest has also recently added four new Portland volunteer opportunities:

Donate Life has also provided details on their 2018 raffle – winners will be vacationing in Maui, Baja California, Santa Fe NM, Lake Tahoe NV, or Seaside OR – see https://www.donatelifenw.org/content/annual-raffle.  For a summary of and links to all this news, see https://mailchi.mp/donatelifenw.org/april-donate-lifeline?e=d7486be0ed.

 

NW16 2/24+ Erase the Wait Portland

The Erase the Wait program will present a training in Portland OR for volunteer transplant mentors on February 24, 2018, and for CKD and dialysis patients on March 18, March 25, and April 1, 2018.  For details see https://www.erasethewait.org/about, the graphic below, and https://www.youtube.com/watch?v=XGkYnpQpgMM.

Previous Erase the Date mentor and mentee participants are invited to a reunion in Portland on March 14, 2018; for details see https://www.donatelifenw.org/civicrm/event/info?id=8390&reset=1.

Discounted ticket sales for Donate Life Northwest’s Family Night Trailblazers basketball game March 30, 2018 in Portland close on February 26, 2018.

NW16 2/24 UW Transplant Dinner

The University of Washington Medical Center Team Transplant provides a life-changing wellness program for transplant recipients and their support team through regular exercise, healthy eating and community support, while promoting organ donation awareness.  They will hold their Annual Fundraising Dinner February 24, 2018 on the UW campus.  For more information on the Dinner and on Team Transplant, and to register for the Dinner, see http://www.cvent.com/events/team-transplant-s-annual-fundraising-dinner/event-summary-9929a6b93dcc4d1996b2693577152b25.aspx.

2/28 Focus Group Nominations

UM-KECC is seeking nominations for patients, caregivers, and providers to participate on one of several focus groups on Patient Reported Outcomes (PRO).  The focus groups will be held to elicit feedback and suggestions for draft question content for two PRO measure topics, Patient Life Goals and Patient Feeling of Safety.  The focus groups will be 2 hour webinar teleconference meetings.  Patient and caregiver nominations require a brief statement of interest, a CV or resume if relevant, and disclosure of any conflicts of interest.  Submit this material to dialysisdata@umich.edu by February 28, 2018.  Contact Jordan Affholter at affjorda@med.umich.edu with any questions.  For details and a conflict disclosure form, see https://annanurse.org/article/call-nominations-esrd-patient-reported-outcomes-focus-groups-january-24-18.

NW16 National Board Patient Members Needed

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.