Category: Patient and Family Engagement (PFE)

October 12-17, 2020 is National Dialysis Technician Recognition Week

Each year, the National Association of Nephrology Technicians / Technologists (NANT) recognizes hemodialysis technicians for the vital contributions they make to the nephrology field. It’s essential to make recognition, including rewards, part of your everyday culture. But that doesn’t mean National Dialysis Technician National Recognition Week should go unnoticed. These extra-special perks will remind all your NCTs and NBTs how much you care. Click here to download resources you can use in your facility to express appreciation.

National Dialysis Technician Recognition Week

AAKP Recognizes IPRO ESRD Network of the South Atlantic for Service to the Kidney Patient Community

The IPRO End Stage Renal Disease (ESRD) Network of the South Atlantic has been selected as the 2020 recipient of the American Association of Kidney Patients (AAKP) Dominick Gentile, MD, Memorial Award – an AAKP National Legacy Award.

Recognizing extraordinary services and programs that significantly benefit the kidney patient community, the award is being given to the IPRO ESRD Network of the South Atlantic for its work on the “Enhanced Patient Engagement to Improve Patient-Centered Outcomes Among Chronic Kidney Disease Project;” an AAKP-led Patient-Centered Outcomes Research Institute (PCORI) Dissemination grant; its longstanding leadership in promoting the important work of the Southeastern Kidney Transplant Coalition; and its ongoing commitment to serving the kidney patient community of Georgia, North Carolina and South Carolina.

“It is an honor for our Network staff to be selected for this prestigious award by a national, patient-led, patient-focused organization that represents the interests and needs of the renal population we are committed to serve,” says Susan Caponi, CEO of IPRO’s ESRD Network Program. “This award spotlights the excellent work of our ESRD Network program staff and the value that the ESRD Network Program brings to kidney patients across the country.”

Shannon Wright, Executive Director, ESRD Network of the South Atlantic adds, “We are thrilled to be recognized with such a highly-regarded award. We value the opportunity to collaborate with our colleagues at AAKP and members of the Southeastern Kidney Transplant Coalition to improve healthcare outcomes and experience of care for the kidney community.”

“AAKP is fortunate to have such a good partnership with IPRO ESRD Network of South Atlantic. They are a valuable resource for the patients and staffed with true professionals. Their team has contributed substantively to the success of the AAKP-lead PCORI project,” said Richard Knight, transplant recipient and President of AAKP.

AAKP patients have been heavily involved in every kidney-related research study, over seventeen funded by PCORI since its inception. Officials from PCORI are regularly involved in AAKP national meetings including the AAKP Annual Policy Summit.

AAKP, the oldest and largest fully independent kidney patient organization in the United States, is dedicated to improving the lives and long-term outcome of kidney patients through education, advocacy, patient engagement and the fostering of patient communities. AAKP fights for early detection; increased kidney transplantation and pre-emptive transplantation; full patient choice of either in-center or home dialysis; protection of the patient/physician relationship; promotion of research and innovation; and the elimination of barriers for patient access to available treatment options. The award was named in honor of Dr. Dominick Gentile (1932-1997), a Board Member of AAKP at a time when the organization was known as the National Association of Patients on Hemodialysis (NAPH), who helped conceptualize the ESRD Networks, its Medical Advisory Board, and the National Forum of ESRD Networks.

The IPRO ESRD Network of the South Atlantic is one of four ESRD Networks managed by IPRO, a non-profit organization that works with government agencies, providers, and consumers to design and implement innovative programs that improve that bring policy ideas to life. In addition to serving as the ESRD Network for the South Atlantic, IPRO manages the ESRD Network of New England, ESRD Network of the Ohio River Valley, and ESRD Network of New York.

Under the direction of the Centers for Medicare & Medicaid Services, the IPRO ESRD Network Program supports the renal community in ensuring safe, effective, patient-centered care for more than 132,000 renal patients in 13 states.

Click here for the official press release.

ACO Care Coordination Toolkit and Beneficiary Engagement Toolkit Available

The Centers for Medicare & Medicaid Services worked with 21 Medicare Accountable Care Organizations (ACOs) and End-Stage Renal Disease Seamless Care Organizations (ESCOs) participating in the Shared Savings ProgramNext Generation ACO Model, and the Comprehensive ESRD Care Model to identify promising practices and innovative strategies for coordinating care for Medicare beneficiaries.

Specifically, the ACO Care Coordination Toolkit focuses on care coordination for Medicare beneficiaries who:

  • Recently received care in an emergency department,
  • Require treatment in a skilled nursing facility,
  • Have recently been discharged home after a hospital or emergency department visit,
  • Have been diagnosed with a chronic condition or have a complex medication regimen, or
  • Have conditions affected by the social determinants of health.

Working with the same methodology, CMS also has released the ACO Beneficiary Engagement Toolkit which highlights strategies used by ACOs and ESRD Seamless Care Organizations (ESCOs) to engage beneficiaries. Specifically, the toolkit explores how ACOs and ESCOs:

  • Engage beneficiaries in ACO governance,
  • Elicit beneficiary and family feedback,
  • Support beneficiaries in self-care management,
  • Enhance beneficiary communication in the clinical setting, and
  • Communicate with beneficiaries about the ACO as a value-based care organization.

These toolkits are part of a broader series of toolkits designed to educate the public about the strategies ACOs use to provide value-based care while also providing actionable ideas to current and prospective ACOs to help them improve or begin operations.

For more information on the toolkits and case studies please visit the ACO General Information webpage.

The Kidney Innovation Accelerator (KidneyX) – Patient Innovator Challenge

The Kidney Innovation Accelerator (KidneyX) is a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) seeking to improve the lives of the 850 million people worldwide currently affected by kidney diseases. KidneyX aims to accelerate breakthroughs to promising new technologies for people with kidney diseases by addressing barriers innovators commonly identify as they develop new products for the prevention, diagnosis, and treatment in kidney care. To do this, KidneyX hopes to create a better collaborative relationship among patients and innovators.

KidneyX Patient Innovator Challenge (Prize Competition)
The Patient Innovator Challenge, funded by the National Kidney Foundation, is looking for ideas and fixes that people living with kidney diseases have developed through their own experiences and ingenuity. In this competition there are two submission categories:

  • Category 1: “Solutions in Practice,” which are solutions already tried or put into practice
  • Category 2: “New Ideas,” which are solutions that have not yet been created or tried.

Anyone can apply for the competition and some key areas submissions may focus on are how to manage the side effects of dialysis or transplant treatment, ways to gain patient independence, successful diet and fluid regimens, techniques to increase physical activity, and methods which help sustain family and social life or improve overall quality of life.

Up to 25 winners will be awarded – 10 winners in Category 1 will receive $4,000 each, and up to 15 winners in Category 2 will receive $2,000.

Submissions are due by 5:00 ET on September 16, 2019. For more information, go to https://www.kidneyx.org/WhatWeDo/PrizeCompetitions/patientinnovatorchallenge

Free Resume Tips Webinar

My Employment Options will present a March 21, 2019 Resume Tips Workshop webinar. Topics include Formatting Tips For Resumes, How To Create Work At Home Resumes, How to Create Onsite Job Resumes, Gaps in Employment, and Career Changes.

Register at https://www.myemploymentoptions.com/webinar-registration-form/.

My Employment Options also offers free job placement services for recipients of SSDI and SSI, including work at home. See https://www.myemploymentoptions.com/apply-now/ for details.

The Seven Step Journey Towards Kidney Transplant

The Centers for Medicare & Medicaid Services (CMS) has incorporated in the 2018 transplant quality improvement activity (QIA) a series of standardized steps toward transplant. According to the 2012 Clinical Journal of American Society of Nephrology article, “Impact of Navigators on Completion of Steps in the Kidney Transplant Process: A Randomized, Controlled Trial,” these steps were first defined and performed in 23 hemodialysis facilities in Ohio. The steps are: (1) Suitability for Referral to Transplant Center; (2) Interest in Transplant; (3) Referral Call to Transplant Center; (4) First Visit to Transplant Center; (5) Transplant Center Workup; (6) Successful Transplant Candidate; (7) On Waiting List or Evaluating Potential Living Donor.

Research has identified that the guidance offered by a transplant navigator –or mentor- helps patients move further and faster through the seven steps than they would without a navigator. If you are interested in starting a Peer Mentorship Program at your facility, contact the Network.

Improved Patient Health Outcomes through Peer Mentors

Did you know that peer mentoring has been proven to be a successful strategy to educate patients about their options for treatment, including transplant? The Network has resources and tools available to help train patients who are interested in becoming peer mentors. Contact the Network today to sign up your facility for the Network’s new peer mentorship training program.

According to the National Kidney Foundation, peer support is reported to be effective in helping kidney patients adjust to kidney disease, long-term dialysis therapy and kidney transplantation. Peer support programs utilize someone who is living with the same disease to assist patients in managing their own health. This can be particularly effective when the patient is newly diagnosed or is having trouble coming to terms with the disease. In addition, peer support has become strongly linked with attempts to increase patients’ ability to self-manage their condition, and the drive to improve healthcare outcomes. Peer support works because patients are able to give each other something the clinician does not have, shared life experience.

A peer mentor empowers fellow patients to move forward with their lives after being diagnosed with ESRD. Peer mentoring provides support and increases the confidence that many new patients need, and offers patients access to someone who has been through the similar experiences and can understand their concerns. Peer mentors can come from all backgrounds. Mentors should be individuals with positive outlooks on managing kidney disease. Individuals who are succeeding at achieving their treatment goals can provide insight to help others successfully manage kidney disease.

 

For more information about peer mentorship visit, https://www.kidney.org/professionals/Peers

Shared Decision Making: The Pinnacle of Patient-Centered Care

In 1988, researchers from the Harvard Medical School, on behalf of the Pickler Institute, developed the model known as the Eight Dimensions of Patient-Centered Care. The model challenges clinicians to cultivate a better understanding of a patient’s illness and address their needs. Secondary to knowledge gain, patients are viewed as equals to clinicians when making decisions about their healthcare.

A component of patient-centered care includes the concept of shared decision making or a process where patients work alongside their clinicians to make decisions about their treatments and care plans. Clinical evidence is reviewed to weigh the risks and outcomes associated with the decisions keeping a focus on the patient’s preferences and values. Benefits that come from patients engaging in the shared decision process include understanding their health along with the pros and cons of different options, being better prepared to collaborate with their healthcare team, and most importantly they are more likely to follow through on their decisions. For more information and tools on shared decision making, visit the New England Journal of Medicine at www.nejm.org and the National Learning Consortium at www.healthit.gov.

Benefits of Peer to Peer Mentorship for Dialysis Patients

The IPRO ESRD Network program provides technical assistance to facilities in multiple ways including education and resources to support patient engagement at the facility level. One way the Network encourages patient engagement is through the assistance we offer to local facilities in implementing or learning more about available peer mentorship/ambassador programs.

According to an article published in 2015, “Potential Impact of Peer Mentoring on Treatment Choice in Patients with Chronic Kidney Disease: A Review,” written by Nasrollah Ghahramani MD, FACP, FASN, peer to peer programs have shown to help patients become more involved in their health care. Patients who work with a peer as a mentor are able to make more informed decisions about their dialysis treatment options and are better informed about transplant processes. Being informed about health care decisions by peers with shared experiences can build self-confidence which then leads to overall better health outcomes.

To read more about Ghahramani’s findings, click here.

To learn more about patient programs offered by your Network or local agencies, contact your ESRD Patient Services Department. Our Patient Services Team is here to assist with resources on the benefits of implementing patient peer programs or other patient support programming at your facility.

Understanding the Importance of Vocational Rehabilitation for ESRD Patients

For many years, Vocational Rehabilitation (VR) and Employment Networks (EN) were thought of as programs for individuals without a disability. Today, more people with disabilities are finding out that is not true and that VR/EN is more than just about employment. In the article titled “Vocational Rehabilitation for People with Disabilities” Gloria K. Lee describes employment as a fundamental right for people with disabilities. She goes on to define VR from an intervention perspective describing the complex process of VR and the different components involved. By reading this article you will understand the importance of assisting ESRD patients in obtaining in VR/EN services to improve their quality of life.

Empower Your Patients: With your help, we can make a difference!

Have any of your patients or their caregivers/family members shared with you their feelings about not being heard?

Has a patient ever shared an idea they felt would be useful for others with ESRD?

If so, we know you’ll understand the value of engaging such individuals in efforts to improve patient care. We need your help!

The Network has convened a group of Patient Subject Matter Experts (SMEs) to provide patient perspective and feedback to the Network on educational materials, quality improvement projects and other issues that relate to our work in improving care to ESRD patients. Please consider nominating patients, transplant recipients, and family members/care partners who are interested in sharing their talents and ideas with other SMEs in the Network.

What do SMEs do? Ultimately, they help Network staff understand what is important to patients, share useful ideas and experiences, and foster Network initiatives at their own dialysis facility and transplant center. Their efforts focus on providing feedback on Network quality improvement activities related to infection prevention, transplant referrals, home dialysis training, vocational rehabilitation, and patient engagement.

For more information, please contact your local Network.