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.
The Institute for Healthcare Improvement will host a free 7 December, 2017 audio “WIHI” program on The (Careful and Kind) Patient Revolution., featuring the Mayo Clinic’s Victor Montori, MD. This Patient Revolution is “a movement based on stories. [It’s] mission is to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.” For more information and to register, see http://forms.ihi.org/next-wihi-on-december-7-at-2-pm-et-the-careful-and-kind-patient-revolution. For The (Careful and Kind) Patient Revolution website, see https://patientrevolution.org/whywerevolt/.
IHI will present a free November 21, 2017 “WIHI” audio program on When Patients Feel as Powerless as Hostages. For full details see http://forms.ihi.org/next-wihi-on-november-21-at-2-pm-et-when-patients-feel-as-powerless-as-hostages .
Donate Life Northwest will sponsor their annual Lifesavers Breakfast November 8, 2017 in Portland OR. The event is the largest gathering of the area’s donation and transplant community. Donate Life Northwest welcomes additional Sponsors and volunteers. For more information and to RSVP, see http://www.donatelifenw.org/content/lifesavers-breakfast .
CMS has announced a Request For Information soliciting suggestions on how to create an affordable, accessible healthcare system that puts patients first. Find details and comment at https://survey.max.gov/429625 .
The Seattle Chapter of the PKD Foundation will host an August 16, 2017 Coffee Chat in Factoria (Bellevue WA) to promote networking among people affected by PKD. The discussion is informal, but a topic or guest speaker is usual. For details and to sign up, see http://support.pkdcure.org/site/Calendar?view=Detail&id=101732 . These events are held more or less monthly; the next one will be September 10, 2017. Watch https://pkdcure.org/chapter/seattle/ for details.
The PKD Foundation will also sponsor an August 19, 2017 Seattle Friends & Family Potluck Picnic & Lemonade Stand, in Seward Park (Seattle). Find more information at http://support.pkdcure.org/site/Calendar?view=Detail&id=101846 .
The Foundation will also sponsor the three-mile Seattle Walk for PKD on October 1, 2017 at Green Lake (Seattle). For details, posters, to register for the Walk or the associated Penny Kids Dash, and to donate, see http://support.pkdcure.org/site/TR/Walk/WalkforPKD?fr_id=1766&pg=entry . So far they have pledges of $10,000 for the Walk, and they seek at lease $45,000 more to support PKD research and create better lives for those impacted by polycystic kidney disease.