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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

2019 T R A N S I T C O O P E R A T I V E R E S E A R C H P R O G R A M TCRP RESEARCH REPORT 203 Research sponsored by the Federal Transit Administration in cooperation with the Transit Development Corporation Subject Areas Public Transportation • Passenger Transportation Dialysis Transportation: The Intersection of Transportation and Healthcare Elizabeth Ellis Sue Knapp Jason Quan Will Sutton KFH Group, Inc. Bethesda, MD i n a s s o c i a t i o n w i t h Marsha Regenstein GeorGe WasHInGton unIversIty Washington, D.C. a n d Tariq Shafi JoHns HopKIns unIversIty Baltimore, MD

TCRP RESEARCH REPORT 203 Project B-45 ISSN 2572-3782 ISBN 978-0-309-48035-2 © 2019 National Academy of Sciences. All rights reserved. COPYRIGHT INFORMATION Authors herein are responsible for the authenticity of their materials and for obtaining written permissions from publishers or persons who own the copyright to any previously published or copyrighted material used herein. Cooperative Research Programs (CRP) grants permission to reproduce material in this publication for classroom and not-for-profit purposes. Permission is given with the understanding that none of the material will be used to imply TRB, AASHTO, FAA, FHWA, FMCSA, FRA, FTA, Office of the Assistant Secretary for Research and Technology, PHMSA, or TDC endorsement of a particular product, method, or practice. It is expected that those reproducing the material in this document for educational and not-for-profit uses will give appropriate acknowledgment of the source of any reprinted or reproduced material. For other uses of the material, request permission from CRP. Cover photo: Example of a shuttle for patients traveling to dialysis facilities. NOTICE The research report was reviewed by the technical panel and accepted for publication according to procedures established and overseen by the Transportation Research Board and approved by the National Academies of Sciences, Engineering, and Medicine. The opinions and conclusions expressed or implied in this report are those of the researchers who performed the research and are not necessarily those of the Transportation Research Board; the National Academies of Sciences, Engineering, and Medicine; or the program sponsors. The Transportation Research Board; the National Academies of Sciences, Engineering, and Medicine; and the sponsors of the Transit Cooperative Research Program do not endorse products or manufacturers. Trade or manufacturers’ names appear herein solely because they are considered essential to the object of the report. DISCLAIMERS The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. The data reported here have been supplied by the United States Renal Data System. The interpretation and reporting of these USRDS data are the responsibility of the authors and in no way should be seen as an official policy or interpretation of the U.S. government. TRANSIT COOPERATIVE RESEARCH PROGRAM The nation’s growth and the need to meet mobility, environmental, and energy objectives place demands on public transit systems. Cur- rent systems, some of which are old and in need of upgrading, must expand service area, increase service frequency, and improve efficiency to serve these demands. Research is necessary to solve operating prob- lems, adapt appropriate new technologies from other industries, and introduce innovations into the transit industry. The Transit Coopera- tive Research Program (TCRP) serves as one of the principal means by which the transit industry can develop innovative near-term solutions to meet demands placed on it. The need for TCRP was originally identified in TRB Special Report 213—Research for Public Transit: New Directions, published in 1987 and based on a study sponsored by the Urban Mass Transportation Administration—now the Federal Transit Administration (FTA). A report by the American Public Transportation Association (APTA), Transportation 2000, also recognized the need for local, problem- solving research. TCRP, modeled after the successful National Coop- erative Highway Research Program (NCHRP), undertakes research and other technical activities in response to the needs of transit ser- vice providers. The scope of TCRP includes various transit research fields including planning, service configuration, equipment, facilities, operations, human resources, maintenance, policy, and administrative practices. TCRP was established under FTA sponsorship in July 1992. Proposed by the U.S. Department of Transportation, TCRP was authorized as part of the Intermodal Surface Transportation Efficiency Act of 1991 (ISTEA). On May 13, 1992, a memorandum agreement outlining TCRP operating procedures was executed by the three cooperating organi- zations: FTA; the National Academies of Sciences, Engineering, and Medicine, acting through the Transportation Research Board (TRB); and the Transit Development Corporation, Inc. (TDC), a nonprofit educational and research organization established by APTA. TDC is responsible for forming the independent governing board, designated as the TCRP Oversight and Project Selection (TOPS) Committee. Research problem statements for TCRP are solicited periodically but may be submitted to TRB by anyone at any time. It is the responsibility of the TOPS Committee to formulate the research program by identi- fying the highest priority projects. As part of the evaluation, the TOPS Committee defines funding levels and expected products. Once selected, each project is assigned to an expert panel appointed by TRB. The panels prepare project statements (requests for propos- als), select contractors, and provide technical guidance and counsel throughout the life of the project. The process for developing research problem statements and selecting research agencies has been used by TRB in managing cooperative research programs since 1962. As in other TRB activities, TCRP project panels serve voluntarily without compensation. Because research cannot have the desired effect if products fail to reach the intended audience, special emphasis is placed on disseminat- ing TCRP results to the intended users of the research: transit agen- cies, service providers, and suppliers. TRB provides a series of research reports, syntheses of transit practice, and other supporting material developed by TCRP research. APTA will arrange for workshops, train- ing aids, field visits, and other activities to ensure that results are imple- mented by urban and rural transit industry practitioners. TCRP provides a forum where transit agencies can cooperatively address common operational problems. TCRP results support and complement other ongoing transit research and training programs. Published research reports of the TRANSIT COOPERATIVE RESEARCH PROGRAM are available from Transportation Research Board Business Office 500 Fifth Street, NW Washington, DC 20001 and can be ordered through the Internet by going to http://www.national-academies.org and then searching for TRB Printed in the United States of America

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, non- governmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org. The Transportation Research Board is one of seven major programs of the National Academies of Sciences, Engineering, and Medicine. The mission of the Transportation Research Board is to increase the benefits that transportation contributes to society by providing leadership in transportation innovation and progress through research and information exchange, conducted within a setting that is objective, interdisciplinary, and multimodal. The Board’s varied committees, task forces, and panels annually engage about 7,000 engineers, scientists, and other transportation researchers and practitioners from the public and private sectors and academia, all of whom contribute their expertise in the public interest. The program is supported by state transportation departments, federal agencies including the component administrations of the U.S. Department of Transportation, and other organizations and individuals interested in the development of transportation. Learn more about the Transportation Research Board at www.TRB.org.

C O O P E R A T I V E R E S E A R C H P R O G R A M S AUTHOR ACKNOWLEDGMENTS This report is the result of research conducted through TCRP Project B-45 by the KFH Group, Inc., in association with Marsha Regenstein, Department of Health Policy, George Washington University, and Tariq Shafi, Department of Medicine, Johns Hopkins University. Elizabeth (Buffy) Ellis and Sue Knapp of the KFH Group served as principal investigators and primary authors of the report. The research project greatly benefited from the participation of Marsha Regenstein and Tariq Shafi. Will Sutton and Jason Quan of the KFH Group were additional contributors in the development of the project’s community data tool. The authors acknowledge and appreciate the support and guidance of the members of the project panel and chair, who provided important information and insights throughout the project. Many thanks also go to the public transit agencies that shared the practices and strategies they have implemented to try to serve dialysis trips effectively. CRP STAFF FOR TCRP RESEARCH REPORT 203 Christopher J. Hedges, Director, Cooperative Research Programs Lori L. Sundstrom, Deputy Director, Cooperative Research Programs Gwen Chisholm Smith, Manager, Transit Cooperative Research Program Dianne S. Schwager, Senior Program Officer Jarrel McAfee, Senior Program Assistant Eileen P. Delaney, Director of Publications Natalie Barnes, Associate Director of Publications TCRP PROJECT B-45 PANEL Field of Service Configuration Annette M. Williams, San Francisco Municipal Transportation Agency, San Francisco, CA (Chair) Mallory R. Avis, Michigan DOT, Lansing, MI Mark G. Bathrick, FTA Office of Program Management, Washington, DC Andre Colaiace, Access Services, Los Angeles, CA Sara J. Dunlap, Minnesota DOT, Saint Paul, MN Rajesh Paleti, The Pennsylvania State University, University Park, PA Janelle Rivera, New Jersey Transit Corporation, Newark, NJ Ipek Nese Sener, Texas A&M Transportation Institute, Austin, TX Carmela R. Tate, Delaware Transit Corporation, Dover, DE Julie Wilcke, Ride Connection, Inc., Portland, OR Steve R. Yaffe, Arlington County Transit, Fort Mill, SC (Retired) Danielle Nelson, FTA Liaison Christopher E. Zeilinger, Community Transportation Association of America Liaison Stephen J. Andrle, TRB Liaison

TCRP Research Report 203 documents the issues and concerns related to transportation for dialysis, a treatment that is annually saving the lives of approximately .5 million Ameri- cans whose kidneys have failed. Those issues and concerns result from the intersection of transportation and healthcare, two industries that have respective roles and requirements. The research report will be of interest to public transportation and healthcare agencies and providers, and to dialysis providers. TCRP Research Report 203: Dialysis Transportation: The Intersection of Transportation and Healthcare presents the following information: (1) end stage renal disease and its prevalence and treatment options in the United States; (2) current and projected demand and costs associated with transportation for kidney dialysis in the United States; (3) healthcare initia- tives that aim to reduce end stage renal disease, improve access to health care, and increase accountability of healthcare providers; and (4) effective practices and new strategies imple- mented by public transportation agencies for funding and providing transportation for kidney dialysis. The research involved a literature review; three surveys; information, data, and consulta- tion with the two healthcare professionals on the research team; development of a forecast- ing tool to estimate needs and costs for dialysis transportation; and follow up with selected public transit providers to document efforts to provide dialysis trips effectively. The following additional deliverables accompany the report and are available on the TRB website at www.trb.org by searching on TCRP Research Report 203. They include • A supplemental report that includes, among other material, the literature review and results of the project’s surveys, as well as an assessment of the comprehensive data pro- vided through the U.S. Renal Data System, which underlies the project’s forecasting tool. • A link to the forecasting tool, which is the community data tool referred to in the report. This Excel tool enables communities to estimate (1) current and projected demand for public sector trips to kidney dialysis facilities, (2) current and projected costs for this transportation, and (3) potential decreases in the demand for, and cost of, public sector trips if home dialysis increases. • Info Brief 1 of 2 and Info Brief 2 of 2 that capture the key findings of the research project. The Info Briefs are also included in the back of the report. F O R E W O R D By Dianne S. Schwager Staff Officer Transportation Research Board

Dialysis Transportation: The Intersection of Transportation and Healthcare Summary—Dialysis Transportation: The Intersection of Transportation and Healthcare Chapter 1—Introduction: Transportation to Dialysis Start at the Beginning—What Is Dialysis?........................................... How Many People Are Treated with Dialysis? .................................... What About Transportation to Dialysis?............................................. The Challenges of Dialysis Transportation .......................................... Transportation Problems Impact Patients and Their Health................ Intersection of Transportation and Healthcare ................................... Objectives and Background of the Research....................................... What Is In This Report?...................................................................... Chapter 2—Chronic Kidney Disease: Context for the Report Introduction ...................................................................................... Understanding Relevant Terms .......................................................... How Many People Have ESRD? .......................................................... What Are the Treatments for ESRD? .................................................. Trends in Treatment .......................................................................... Why Is Facility-Based Dialysis Most Common? ................................... Impact of Medicare Payment on Dialysis Treatment Trends ............... What About an Artificial Kidney? ....................................................... Table of Contents 1.1 1.1 1.2 1.2 1.5 1.5 1.7 1.8 2.1 2.1 2.2 2.3 2.5 2.6 2.8 2.10

Dialysis Transportation: The Intersection of Transportation and Healthcare Chapter 3—Transportation to Dialysis: Modes and Money Introduction....................................................................................... How Do Patients Get to and From Dialysis? ........................................ What Are the Transportation Issues and Challenges? ......................... Transportation Funding...................................................................... Federal Funding for Dialysis Transportation........................................ What Does All This Mean? ................................................................. Chapter 4—Initiatives on the Healthcare Side Introduction....................................................................................... Transportation—A Social Determinant of Health………………………………. Direct Initiatives................................................................................. Indirect Initiatives .............................................................................. Healthcare Programs Providing Transportation .................................. Chapter 5—Demand and Costs for Dialysis Transportation: A Data Tool Introduction....................................................................................... The Community Data Tool.................................................................. Where the Data Come From—Inputs.................................................. What the Tool Reports—Outputs ....................................................... How to Use the Community Data Tool................................................ Stepping Back—What Does This Mean at the National Level?............. Chapter 6—Initiatives on the Transportation Side Introduction....................................................................................... Transit Agency Initiatives in Five Categories ....................................... 3.1 3.1 3.3 3.9 3.12 3.22 4.1 4.1 4.2 4.3 4.7 4.11 5.10 5.1 5.1 5.1 5.4 5.6 6.1 6.1 Chronic Kidney Disease.......................................................................

Education .......................................................................................... Operational Strategies ....................................................................... Coordination with Dialysis Facilities ................................................... Funding ............................................................................................. References ………………………………………………………………………………. R.1 Info Briefs Info Brief 1 of 2—Problems with Dialysis Transportation Info Brief 2 of 2—Improving Dialysis Transportation? 6.7 6.15 6.28 6.36 Dialysis Transportation: The Intersection of Transportation and Healthcare Policies .............................................................................................. 6.2

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Medical literature has identified transportation as a factor in missed and shortened dialysis treatments, which leads to negative health outcomes. These adverse outcomes include, among others, increased hospitalizations because patients do not receive their scheduled treatments. For public transportation agencies, dialysis transportation has become a critical concern as increasing numbers of individuals with end stage renal disease turn to their community’s public transit service for their six trips each week for dialysis.

TCRP Research Report 203: Dialysis Transportation: The Intersection of Transportation and Healthcare responds to major concerns of public transportation agencies about the rising demand and costs to provide kidney dialysis trips and about experiences showing these trips require service more specialized than public transportation is designed to provide.

The report documents the complicated relationship of two different industries—public transportation and healthcare, each with its own perspective and requirements—to highlight problems, identify strategies addressing concerns, and suggest options that may be more appropriate for dialysis transportation.

The following additional materials accompany the report:

• A Supplemental Report that includes, among other material, the literature review and results of the project’s surveys, as well as an assessment of the comprehensive data provided through the U.S. Renal Data System, which underlies the project’s forecasting tool.

• A forecasting tool, which is the community data tool referred to in the report. The Excel forecasting tool enables communities to estimate (1) current and projected demand for public sector trips to kidney dialysis facilities, (2) current and projected costs for this transportation, and (3) potential decreases in the demand for, and cost of, public sector trips if home dialysis increases.

• Info Brief 1 of 2 and Info Brief 2 of 2 capture the key findings of the research project.

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