Patient Employment and Advisory Council

The December issue of the Northwest Renal Network’s patient newsletter, Network Consumer News, focuses on the Patient Advisory Council or PAC, and includes stories about three of the seven current PAC members and their experience with Vocational Rehabilitation.  We’ve mailed these to facilities for distribution, but you can get a copy on the Network 16 website.  As usual, we also have a Spanish edition and a large-print edition.  With this issue we’ve also included a flyer or poster encouraging committed and engaged patients and care partners to join the PAC.  Find them all at https://www.nwrn.org/patients-a-family/ptedres/ncn.html .  You can also find more information on the Network 16 PAC at https://www.nwrn.org/patients-a-family/patient-advisory-committee.html .  In southern California, find information about the Network 18 PAC and other volunteer opportunities at http://www.esrdnetwork18.org/patients/how-to-get-involved/ and http://www.esrdnetwork18.org/about/governance/ .

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Grievance Toolkit

The Kidney Patient Advisory Council (KPAC)  and the Forum of ESRD Networks Medical Advisory Council (MAC) have announced the release of the Dialysis Patient Grievance Toolkit.  This toolkit was written BY PATIENTS and FOR PATIENTS and is intended to help guide dialysis patients through the grievance process.  KPAC acknowledges the help and support of the entire ESRD Network system in creating the Toolkit.  Find it and the other MAC Toolkits at http://esrdnetworks.org/mac-toolkits-1 .

9/14 AAKP HealthLine on Twitter

AAKP will present a September 14, 2016 AAKP HealthLine webinar on The Power of Twitter to Build Your Patient Voice, featuring a social media expert who’s also a kidney patient.  For information and registration see https://www.aakp.org/community/programs-events/aakp-healthline.html .  For a library of recorded prior HealthLine webinars, see https://www.aakp.org/media-files/aakp-healthline.html .

6/28 Patient-Family Advisors

Patient & Family Centered Care Partners (known as PFCCpartners) will host a Patient Family Advisors (PFA) Skills Exchange on June 28, 2016 at Pomona Valley Medical Center in Pomona, CA.   The PFA Skills Exchange is a 4-hr preparatory course for patients and families working with healthcare organizations in an advisory capacity.  All PFAs are welcome to join.  For more information and registration, see  https://pfccpartners.com/services/patient-family-advisor-skills-exchange/ .

The PFA Skills Exchange is intended for Patient Family Advisors.  Healthcare Professionals are encouraged to contact Stephen@pfccpartners.com to learn about other programs more applicable to your needs.

QIP Patient-Oriented Measures

CMS. via a contract with the University of Michigan KECC, is seeking input on patient-reported outcomes, and patient-centered outcomes of ESRD treatment.  They want input on what specific patient-reported and patient-centered measures would be meaningful to both patients and providers, and input on what data might support development and testing of these outcome measures.  They request that you send your suggestions to dialysisdata@umich.edu by June 30, 2016.  For more information, see http://www.renalweb.com/dailynews.htm and scroll down to June 9, 2016.

5/31 AAKP HealthLine Webinar on Social Media

On May 31, 2016, AAKP HealthLine will repeat the popular program on Mastering Social Media as a Patient Advocate, presented by  dialysis patient James Myers.  Social media has become a useful advocacy resource and this webinar will cover how to get started, how to tap into your networks, and how to advocate for yourself.  For details and registration see https://www.aakp.org/component/ohanah/mastering-social-media-as-a-patient-advocate-1.html?Itemid=166 .