Welcome to the July Issue of
ACT IVATION
In This Issue
 
  • July 2019 Quality Improvement Activity (QIA) Learning and Action Networks (LANs)

  • National Patient and Family Engagement LAN (NPFE-LAN) Peer Connection Calls

  • Human Centered Design (HCD) Updates

  • New End Stage Renal Disease (ESRD) Patient Orientation Package (NEPOP) Workgroup

  • Kidney Community Emergency Response (KCER) Program 2019 National Exercise 
Quality Improvement
Learning and Action Networks
Following is an overview of the upcoming July 2019 QIA LAN meetings:

July 2 Bloodstream Infections (BSIs)
A panel of speakers from Upper Peninsula System Portage Dialysis will explain how they implemented the Centers for Disease Control and Prevention (CDC) core interventions and reduced the facility BSI rate from 4.5 in 2018 to 2.2 in 2019. The panel, which includes Karen Kelley, RN, Cindy Martineau, RN, Melissa Hoffmeyer, RN, and Angela Harju, CCHT, will share strategies for using the CDC Dialysis Collaborative Audit Tools with management and peers, and offer ideas for engaging patients and families in infection prevention.

July 9 Home Modalities
This meeting will feature the successful in-center hemodialysis Home Ambassador Program at DaVita Wofford Dialysis located in Greenville, SC. Debra Bowser, RN, will describe what the program is, how it was implemented, and how the facility achieved ten home conversions during 2018. 

July 16 Transplant
Courtney Rodgers, LCSW, from Fresenius Medical Care City Center in New York, will discuss barriers patients encounter during the process of being referred, evaluated, and wait listed for a transplant. Ms. Rodgers will identify successful strategies for minimizing barriers and share best practices for building relationships with local transplant centers. 
Patient and Family Engagement
Peer Connection Calls
A common theme across the NPFE-LAN Affinity Groups this year is the value of learning from and connecting with other individuals with ESRD as a way to improve patient quality of care and quality of life. Based on this feedback, the NCC will be hosting three patient- and family-focused Peer Connection Calls during July, with topics including home dialysis, kidney transplant, and caregiving.
  
The Peer Connection Calls will provide an opportunity for patients and their family members to ask questions, speak to, and learn from NPFE-LAN Subject Matter Experts (SMEs) who made the decision to dialyze at home, receive a kidney transplant, or care for a loved one with kidney disease.

While the intended audience for the live calls are patients and families only , each call will be recorded and posted to the National Coordinating Center (NCC) website for access after the call. Please help support the work of the NPFE-LAN by sharing this information with providers in your Network service area, promoting through social media, and/or posting to your website. 
Home Dialysis
Peer Connection Call
Thursday, July 11, 2019
Kidney Transplant
Peer Connection Call
Thursday, July 25, 2019
Kidney Caregiver
Peer Connection Call
Tuesday, July 30, 2019
Human Centered Design
Increase Access to Transplant and Reduce the Kidney Discard Rate
During 2018, the NCC, the Centers for Medicare & Medicaid Services (CMS), and Accenture conducted research to uncover root causes of behavioral factors impacting kidney transplant and discard rates. The research included a literature review, ethnographic interviews, and an ideation session that generated over 150 ideas, which were grouped into 26 concepts. This June, the NCC, CMS, and Accenture held a meeting to kick-off activities for the next phase of the project, which will include a review of the 26 concepts to identify and prioritize those with the greatest potential to improve the ESRD patient transplant experience, with selected concepts being further refined and pilot tested. A complementary effort to improve transplant and discard rates is being conducted with transplant centers and organ procurement organizations.
 
The NCC will be conducting additional research and interviewing for the second phase of the transplant project during the early fall. To ensure we are taking Network evaluations into consideration as the next stage is planned, we would appreciate you sharing your scheduled evaluation dates so that activities can be planned in accordance with Network availability. While a response is not required, your willingness to provide this information will be helpful in developing a plan that accommodates the Networks. If interested, please email the information to JMoss@hsag.com
Increase the Use of Home Dialysis Modalities in the ESRD Community
The NCC is conducting research related to strategies for increasing the use of home dialysis modalities in the ESRD community. Research began in June 2019 and included a literature search and an actor mapping session. Ethnographic research begins this month (July 2019). 
 
Please contact Julie Moss at  JMoss@hsag.com if you would like to recommend stakeholders to participate in this project, including patients and caregivers, dialysis and home program providers, and/or nationally-recognized experts from your Network service area.  
Develop a Patient Social App 
The NCC is currently completing its synthesis of the ideas and feedback collected from the May 2019 ideation session for the Patient Social App development. The 250 ideas generated by participating patients, caregivers, CMS, and facility staff, including a nephrologist, nurse, social worker, and dietitian, are being used to inform the HCD-driven development of an app that will increase patient empowerment and activation.
Communication and Coordination
New ESRD Patient Orientation Packet (NEPOP) Workgroup
Each year, CMS mails a NEPOP to more than 100,000 new ESRD patients with the goal of providing them with the education and resources needed to make informed choices about their care. While the NEPOP contains valuable material, it is well known that new dialysis patients experience a significant emotional reaction within the first three to six months of treatment, making it difficult to absorb new information during that time. For patients with questions about their diagnosis and treatment options, understanding this information can be critical to getting on a successful treatment path.

In 2018, the NCC convened a national workgroup, including patients, families, caregivers, and stakeholders, who met to review and provide recommendations for improving current NEPOP content and delivery methods. Beginning in September 2019, the NCC will conduct a pilot project to test the effectiveness of the workgroup’s recommendations for updated NEPOP content and distribution. Beginning in this month, July 2019, the NCC will convene a new workgroup to help guide development and implementation of the testing plan. 
Patient Grant Library
Patients and families are excited about the new Patient Grant Library! The Patient Grant Library resources can be used to help find fundraising options to support creative pursuits, start-up grants for a small business idea, scholarships for going back to school, and more. During June, the NCC partnered with the American Association of Kidney Patients (AAKP) to promote the patient Grant Library webpage through the AAKP blog. The NCC is working with other community stakeholders, including the Renal Support Network, to spread this unique resource to even more patients and providers.
 
The NCC invites all renal community partners to share the Patient Grant Library badge on their websites, social media sites, and blogs. Instructions on how to post the badge can be found on the Patient Grant Library webpage .
Mark Your Calendar
NCC Event Calendar

Click here to view the July 2019 event calendar. The calendar displays dates and times for the QIA and Patient Experience of Care LANs, National PFE LAN and Affinity Group meetings, Community of Practice calls, and Forum of ESRD Networks meetings. 

Health and Safety Observances

July 1–31, 2019, National Minority Mental Health Awareness Month
This observance aims to improve access to mental health treatment and services for multicultural communities and to raise awareness about the effects of mental illness on racial and ethnic minority populations. Visit the National Alliance for Mental Illness website to learn more and get resources to take part in raising awareness. 

July 14–27, 2019, ECHO Donate Life (Every Community Has Opportunity)
This campaign focuses on making the Donate Life message one of diversity and inclusion. The goal is to empower multicultural communities to register as donors and to encourage meaningful conversations about donation. Visit the Donate Life website to learn more and access campaign materials. 

July 28, 2019, World Hepatitis Day
This observance aims to raise global awareness of hepatitis, Hepatitis A, B, C, D, and E, and encourage prevention, diagnosis, and treatment. Visit www.worldhepatitisday.org to learn more about the global burden of hepatitis and to download campaign materials.
 
August 1–31, 2019, National Immunization Awareness Month (NIAM)
National Immunization Month organizers hope to raise awareness about vaccines and share strategies to increase immunization rates. For CDC immunization materials to use in outreach and education efforts during NIAM, visit https://www.cdc.gov/vaccines/partners/index.html
KCER National Exercise—November 9, 2019
The KCER National Exercise is scheduled for November 9, 2019. This year, CMS and KCER are encouraging the Networks to identify creative ways to involve community stakeholders as part of the exercise activities. Having strong, established relationships is key to any emergency management program. Involving partners in the exercise will provide an opportunity for the community to work together before an incident occurs and help to establish clear roles and responsibilities and open lines of communications that could aid in the response to a real-world emergency.

To support this strategy, KCER is hosting a call for Network Executive Directors on July 22, 2019, to discuss ways that the Networks can involve community partners and stakeholders in the 2019 KCER National Exercise. Chris Brown, ESRD Networks 3 and 4, will provide details and insight into the successes those Networks have seen from involving partners in past exercises.

KCER appreciates the support of the Network Program and the willingness of the Networks to participate in activities to continually test and improve the ESRD Network Program emergency response plan. For additional information and examples about the critical role that partnerships play during emergencies, visit: https://www.phe.gov/ASPRBlog/Pages/BlogArticlePage.aspx?PostID=346
Don’t forget to ‘ Like’ the ESRD NCC on Facebook.
‘ Follow’ us @ESRDNCC on Twitter.
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This material was prepared the End Stage Renal Disease National Coordinating Center (ESRD NCC) contractor, under contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services. The contents presented do not necessarily reflect CMS policy nor imply endorsement by the U.S. Government. FL-ESRD NCC-7N1T02-07012019-01