KCER Patient SME Guide An Introduction to Being a National Kidney Community Emergency Response (KCER) Patient and Family Engagement Learning and Action Network (N-K-PFE-LAN) Patient Subject Matter Expert (SME)
Thank you for volunteering to be a N-K-PFE-LAN Patient SME! The role of a KCER SME is an important one. This guide will explain more about what your role as a KCER Patient SME will be, including: How you can help. What is expected of you. Who KCER is. What KCER, with your help, hopes to achieve. Your time and effort are greatly appreciated. Thank you for your willingness to work with us as a KCER SME. After you have had a chance to read this guide, please let us know if you have any questions. We look forward to hearing from you. We look forward to your input. Your Role Your role may include: Helping with the creation of educational materials for patients. Developing and reviewing KCER documents to make sure they are patientcentered. Sharing your patient story with fellow patients, ESRD Networks, and members of the Centers for Medicare & Medicaid Services (CMS). Joining quarterly conference calls. Providing the patient perspective in KCER Workgroups. Evaluating quality improvement activities. Page 2 of 13
KCER Patient SME Participation Guidelines There are certain policies that guide KCER Patient SME involvement. SMEs must sign an agreement to participate/volunteer for one year. At the end of each year, they may choose to continue as a SME or not. If you choose to stay on as a SME, you must sign a renewal agreement. Changes to your contact information must reported to the KCER staff in a timely manner. This is so we can stay in touch with you. Contact information includes phone, email, and address. Some SMEs choose to participate in additional roles as well, including serving on one of the KCER Workgroups: o Communications o Clinical Practice o Facility Operations Pandemic and Infectious Disease o Physician Expert o Training and Education Page 3 of 13
KCER Workgroups There are six KCER workgroups which focus on specific areas of preparedness and response activities. Patient SMEs are encouraged to join one or more of these workgroups. Workgroup Communication Clinical Practice Facility Operations Pandemic and Infectious Disease Physician Expert Training and Education Activities Improve or enhance communications to ensure that information is available to assist the kidney community during the response and recovery phase of a disaster, thereby ensuring continuity of care Develop a plan to ensure that professional dialysis staff, including nurses, technicians, social workers, and dietitians, will be available to assist patients during a disaster Facilitate cooperative planning within the kidney and disaster preparedness/response/recovery communities; assist with dialysis facility preparation, response, and recovery efforts Develop and spread plans to help the kidney community maintain its ability to care for patients in the event of emerging and/or widespread infectious disease outbreaks Provide nephrology-specific medical expertise to other teams; manage care of kidney failure and transplant patients during large-scale crises Develop a training program for the kidney community, including patients and providers, that addresses preparedness and response capabilities; develop training materials As a workgroup member, volunteers agree to: Participate in at least two teleconferences or meetings per year. Contribute to the workgroup s activities through email. Volunteer for outreach activities, as available. Follow their own organization s rules while volunteering for the KCER workgroup. Act responsibly and professionally. Keep their contact information current. Notify the workgroup chair if for any reason they are unable to continue as a member of the workgroup. Page 4 of 13
Background of the KCER Program The first National Disaster Summit for the kidney community was held in Washington, D.C., in January 2006. During the Summit, the Kidney Community Emergency Response (KCER) Coalition was formed. Its purpose was to minimize disruption to life-sustaining dialysis and transplant services in the event of an emergency. The KCER Program was to include representation from the entire kidney community, including: Patient and professional organizations. Practitioners serving patients with kidney failure, such as: o Nurses. o Technicians. o Dietitians. o Social Workers. o Physicians. Providers, including: o Independent dialysis facilities. o Large dialysis organizations. o Transplant facilities. o Hospitals. o Suppliers. o ESRD Networks. o State emergency and State Survey Agency representatives. Federal agencies, including the: o Food and Drug Administration (FDA). o Centers for Disease Control and Prevention (CDC). o National Institutes of Health (NIH). o CMS. In 2007, the first KCER Summit was held on March 1 in Baltimore, Maryland. The KCER Program continues to hold an annual Summit to promote emergency preparedness in the kidney community. Page 5 of 13
Goals of the KCER Program KCER serves as the leading authority on emergency preparedness and response for the kidney community. The Program provides organization and guidance that seamlessly bridge the needs of emergency management stakeholders and the ESRD community nationwide. Its goals are to: Raise public awareness of: o The critical needs of people with kidney failure. o The need to plan ahead to ensure that life-saving dialysis services are obtainable in the event of an emergency and/or disaster. Promote and distribute tools and resources to: o Individuals with kidney failure. o Dialysis facilities. o Federal, state, and emergency workers. Test and refine the national response strategy in place to assist federal, state, and local efforts in the event of an emergency and/or disaster. Page 6 of 13
HIPAA and the Privacy of Medical Information What is HIPAA? HIPAA is the Health Insurance Portability and Accountability Act of 1996. This Act protects the healthcare privacy of all Americans. Basically, it means that all information about your health is private and should be kept private. Sharing Your Medical Information with Other Patients You may choose to share your health information with others, but that is up to you. If someone shares their health information with you, you must keep it confidential. Don t Give Medical Advice As kidney patients, you have a lot to teach each other; and you are free to share your own experiences. But be careful! Never act as an authority regarding medical information. Never give medical advice. Medicines or a diet that works for you may be dangerous or even deadly to another patient. Even a tiny difference in a person s medical condition can make a difference. Remember, you are the expert on being a patient. Medical professionals are the experts on healthcare. The best help you can give to another patient is to send them to the right staff member. Page 7 of 13
Acronym Guide 2728 ESRD Medical Evidence Report A AAKP AKF APRN AVF AVG B BFR BMI BOD BP BSI BUN C CAPD CCHT CCN CCPD CDC CDN CEU CfC CHT CKD CM CMS COPD COR CW American Association of Kidney Patients American Kidney Fund Advanced Practice Registered Nurse Arteriovenous Fistula Arteriovenous Graft Blood Flow Rate Body Mass Index Board of Directors Blood Pressure Bloodstream Infection Blood Urea Nitrogen Continuous Ambulatory Peritoneal Dialysis Certified Clinical Hemodialysis Technician CMS Certification Number (Previously MPN) Continuous Cycling Peritoneal Dialysis Centers for Disease Control and Prevention Certified Dialysis Nurse Continuing Education Unit Conditions for Coverage Certified Hemodialysis Technician Chronic Kidney Disease Clinic Manager Centers for Medicare & Medicaid Services Chronic Obstructive Pulmonary Disease Contracting Officer s Representative CROWNWeb Page 8 of 13
D DFC E EMR Acronym Guide Dialysis Facility Compare Electronic Medical Record EMTALA Emergency Medical Treatment and Labor Act of 1986 EPO Epogen or Erythropoietin ESRD ESRD NCC F FA FOIA H HAI HbsAb HbsAg HBV HD HGB HHD End Stage Renal Disease End Stage Renal Disease National Coordinating Center Facility Administrator Freedom of Information Act Healthcare-Associated Infection Hepatitis B Surface Antibody Hepatitis B Surface Antigen Hepatitis B Virus Hemodialysis Hemoglobin Home Hemodialysis HIPAA Health Insurance Portability and Accountability Act of 1996 HSAG I ICHD ICH CAHPS IDT IVD IVT K KCER Health Services Advisory Group, Inc. In-Center Hemodialysis In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems Interdisciplinary Team Involuntary Discharge Involuntary Transfer Kidney Community Emergency Response Page 9 of 13
KDOQI KDQOL Kt/V L LAN LDO LTC M MRB N NC NCC NKF N-PFE-LAN O OCR P PA PAC PCP PCT PD PEP PFE POA POC Acronym Guide Kidney Disease Outcomes Quality Initiative Kidney Disease Quality of Life Survey Method to Measure Adequacy of Dialysis: K = the Dialyzer Clearance, T = Time on Dialysis, and V = Volume of Water in the Patient's Body Learning and Action Network Large Dialysis Organization Long Term Catheter Medical Review Board Network Council National Coordinating Center National Kidney Foundation National Patient and Family Engagement Learning and Action Network Office for Civil Rights (Organization within HHS) Physician Assistant Patient Advisory Committee Primary Care Physician, Primary Care Provider, Primary Care Practitioner Patient Care Technician Peritoneal Dialysis Performance Evaluation Program Patient and Family Engagement Power of Attorney Plan of Care Page 10 of 13
PPE PSC PSC/PSR PSD Q QAPI QI QIA QIC QID R RCA RD REMIS RN S SME SA SSDI SSI SSN T TPS U UNOS UPI Acronym Guide Personal Protective Equipment Patient Services Coordinator Performance Score Certificate or Performance Score Report Patient Services Director Quality Assessment and Performance Improvement Quality Improvement Quality Improvement Activity Quality Improvement Coordinator Quality Improvement Director Root Cause Analysis Registered Dietitian Renal Management Information System Registered Nurse Subject Matter Expert State Survey Agency Supplemental Security Disability Insurance, Social Security Disability Insurance Supplemental Security Income Social Security Number Total Performance Score United Network of Organ Sharing Unique Patient Identifier Page 11 of 13
Resources The Kidney Community Emergency Response (KCER) Program American Association of Kidney Patients (AAKP) American Kidney Fund (AKF) Centers for Disease Control and Prevention (CDC) Dialysis Patient Citizens (DPC) Federal Emergency Management Agency (FEMA) Forum of ESRD Networks National Kidney Foundation (NKF) National Kidney Foundation Transplant Resources Ready.gov www.kcercoalition.com www.aakp.org www.kidneyfund.org www.cdc.gov www.dialysispatients.org www.fema.gov www.esrdnetworks.org www.kidney.org www.kidney.org/atoz/content/kidneytransnewlease www.ready.gov Page 12 of 13
Contact Information KCER 3000 Bayport Dr., Suite 300 Tampa, FL 33607 KCER Hotline: 866.901.3773 Email: KCERinfo@hsag.com Fax: 855.232.KCER (855.232.5237) www.kcercoalition.com www.facebook.com/kcercoalition @KCERProgram This material was prepared by the Kidney Community Emergency Response (KCER) 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. CMS Contract #: HHSM-500-2016-00007C Publication Number: FL-KCER-7K2T2B-02072017-01 Page 13 of 13