Community Care Coordination Performance

Transcription

Community Care Coordination Performance Measures
Advancing Quality Improvement Efforts
Through the Use of Standardized
COMMUNITY CARE COORDINATION
PERFORMANCE MEASURES
100 –
90 –
80 –
70 –
60 –
50 –
40 –
30 –
20 –
10 –
0 –
COMMUNITY
CARE
COORDINATION
PERFORMANCE
MEASURES
ACKNOWLEDGEMENTS
Many parties were involved in the success of the NIH-Community Care Coordination Performance Measures
(NIH-CCCPM) study and in the preparation of this Technical Report.
The National Institutes of Health (NIH) provided funding for this project through the American Recovery &
Reinvestment Act of 2009, Grant Award No. 1RC2MD004781-01. Within NIH, the project was possible through the
administration and support of the National Institute on Minority Health and Health Disparities (NIMHD).
In particular, we thank Irene Dankwa-Mullan MD, MPH, Director, NIMHD Office of Innovation and Program
Coordination. We are grateful that Dr. Dankwa-Mullan included this study as one of the unique health innovations
in her portfolio. We also appreciate the leadership and support of NIMHD Director John Ruffin, PhD, and Rick
Berzon, DrPH, Program Officer, Office of Innovation and Program Coordination, who provided input during the
project’s implementation.
Technical Expert Panel member support was essential and was greatly appreciated. Members include: Co-Chairs,
Veronica Nieva, PhD and Sarah Redding, MD, and the following other members, Wendy L. Gary, MHA; Denise
Levis Hewson, RN, BSN, MSPH; Melanie Moyer Swan, MPH, PMP; Mary Overall, BS, MSN; Dan Rubin, MPP; Jan
L. Ruma, MEd, CFRE; and Judith Warren, MPH.
Thanks are offered to the Community Study Sites, their leadership and the local personnel involved. In particular,
we would like to thank, Sarah Redding, MD MPH and Mark Redding, MD, FAAP (Ohio – Community Health Access
Project); Sherry E. Gray, MA and Susie Dittman, MHA, (Indiana – Rural and Urban Access to Health); Tom Hoover,
RN MBA-HCM and Jean Stilwell, MA, (Nebraska – Lincoln E. D. Connections); James Walton, DO, MBA, Adam
Chabira, MHA, and Steven Walton, MBA (Texas – Baylor Community Care), and Christine Sison, MS and Greg
Bergner, MD (California – Access El Dorado).
Prepared by: Westat.
Reprinting and Distribution: This document may be used and reprinted with permission from Westat. Contact:
Brenda A. Leath, MHSA, PMP by sending an email request to brendaleath@westat.com.
Suggested Citation: Leath, B., Mardon, R., Atkinson, D., Johnson, M., Smith, S., Rajapaksa, S., Kilian, T.,
Gary, L., & Darden, M. (2012). NIH-Community Care Coordination Performance Measures (NIH-CCCPM) Project
Technical Report on Project: Standardizing Community Care Coordination Measures Linked to Improvements
in Quality of Life and Health Outcomes Among Vulnerable Populations. Prepared by Westat under the American
Recovery & Reinvestment Act of 2009, National Institute on Minority Health and Health Disparities, National Institutes of Health Grant Award No. 1RC2MD004781-01.
i
FOREWORD
BRENDA A. LEATH, MHSA, PMP
Brenda A. Leath, MHSA, PMP
Project Director/Co-Principal Investigator
RUSS MARDON, PHD
Russ Mardon, PhD
Co-Principal Investigator
Established in 1963, Westat has a rich history of conducting evidence-based research. In the health-care arena,
Westat works to help inform the cost effectiveness of treatment, improve care delivery, and reduce costs. Many of
such efforts involve improving outcomes for vulnerable populations who face health disparities.
Many of Westat’s current and previous engagements helped inform and enrich the NIH-Community Care Coordination
Performance Measures (NIH-CCCPM) study. This includes Westat’s role in implementing and monitoring the Health
Innovation Exchange for the Agency for Healthcare Research and Quality (AHRQ) and the company’s involvement
in the national Community Care Coordination Learning Network (CCCLN).
The NIH-CCCPM study is a distillation of some of the best features of Westat’s work. Through its communitybased participatory research (CBPR) design, a multi-disciplinary team of study members agreed on transparency
in sharing information about service delivery and care. Everyone helped identify and track performance measures
that could be standardized across venues and populations. Yet, the team also acknowledged and learned from site
differences – cultural and linguistic, management design, services offered and people being served.
The study can help demonstrate how standardized performance measures, combined with evidence-based care
in a community care coordination environment can result in a positive return on investment. Outcomes can include
greater health literacy, better self-care, improved health and quality of life for patients and lowered costs for systems
and communities. Studies such as these can also help advance national plans toward health disparities reduction
and improvement of the availability of quality health services for all, in a timely, efficient, responsive, and coordinated
nationwide system of care.
We want to thank all those involved with this study – funder, colleagues, study participants, site personnel, and
other stakeholders. We hope to continue working with you in support of healthcare delivery improvements with
positive outcomes for all.
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TABLE OF CONTENTS
Chapter
1
2
Page
Acknowledgements
i
Foreword
ii
Executive Summary
vi
Introduction
1
What You Will Find in This Report
1
Intended Audience
2
Some Frequently Used Terms
2
Health Disparities, Social Determinants of Health, Vulnerable Populations
2
Care Coordination and Community Care Coordination
2
Pathways Community HUB Model
3
Medical Home
3
Community-Based Participatory Research (CBPR)
4
How the NIH-CCCPM Study Project Evolved From Earlier Efforts
4
Relationship to Federal Efforts
4
NIH, NIMHD and ARRA “Grand Opportunity” Grants
5
HHS 2011 Action Plan to Reduce Racial and Ethnic Health Disparities
5
Affordable Care Act and Accountable Care Organizations
5
Key Players: Participating Organizations
7
National Institute on Minority Health and Health Disparities (NIMHD)
8
Westat
8
Technical Expert Panel
8
Matrix Knowledge Group
9
Study Sites
9
Community Health Access Project
9
Rural and Urban Access to Health
10
Baylor Community Care
10
Lincoln E. D. Connections
10
Access El Dorado
11
Chapter
3
Page
Project Design and Implementation
13
Project Objectives and Methodology
14
Objectives
14
Methodology – Community Based Participatory Research (CBPR)
14
Activities
4
15
Site Selection
15
Conceptual Model, Selecting, Defining and Refining Performance Measures
15
Engagement of Data Research Associates
16
Gaining Permissions to Access Records and Participants
16
Testing the Measures, Protocols and Processes
16
Collecting Client Services Data
17
Administering and Collecting Patient/Client Feedback
17
Data Cleaning and Analysis
18
Findings and Results
19
Part 1. Performance Measures for Community Care Coordination
20
Part 2. Results From the Quantitative Data
21
Results – Sites’ Use of the Community Care Coordination Performance Measures
23
Part 3. Results From the Qualitative Data
28
Study Site Managers: Comments, Perspectives on Study Participation
28
Theme 1: Site Operations Continued as Usual
28
Theme 2: There are Benefits to Participation in a National Study
28
Theme 3: Study Findings Mirror Our Local Analysis and Add to the
Evidence Base
29
Theme 4: The Study Provided Numerous Other Benefits
29
Study Sites’ Future Interest and Recommendations for Next Steps
30
Chapter
5
Page
Implications and Conclusions
31
Study Accomplishments
32
Key Lessons Learned/Take Home Messages
32
Implications for Importance to Community Care Coordination Organizations
32
Implications for Research Community
33
Moving Forward
33
Study Sites Additional Efforts – Expanding Capacity
33
Dissemination
34
In Conclusion
35
HUB Snapshots
37
Appendix
38
39
40
Lincoln E.D. Connections
41
Access El Dorado
38
Endnote
Citations
43
Tables
1
List of Performance measures for community care coordination including
measurement domains, pathways components, and measure names
20
2
Client characteristics by site
22
3
Additional client characteristics by site
22
1
Community hub: Medical home pathway
4
2
Geographic dispersion of study sites
9
3
Health care referral completion
24
4
Social or support services referral completion
25
5
Client overall health status with past 2 months
27
Figures
Executive Summary
“There is measure in all things”
Horace, Satires
Roman lyric poet & satirist (65 BC – 8 BC)
During the last decade, national interest in performance measurement for healthcare services as well as other
industry sectors has grown exponentially in response to a number of political, economic, and legislative imperatives.
There are many ‘voices,’ including public constituents, payers, Federal and municipal entities who are calling for
reforms and “demanding an explicit measurement of individual and system quality measures. There are tremendous
pressures and expectations to accurately measure individual physician (or a system of care) performance.” In this
regard, there is a prevailing assumption that community care networks have an important contribution to make to
health care reform and quality improvement efforts—and do so with measurable outcomes in ways that are cost
effective. However, more scientific and evidenced-based data are needed to support this claim.
This Technical Report contains an overview of the NIH-Community Care Coordination Performance Measures
(NIH-CCCPM) research study, led by Westat, which focused on performance measurement development and data
collection methodologies for primary health care services delivered in geographically diverse community settings.
Written with a content orientation for community-based service providers, potential funders, and local and regional
stakeholders, this report is designed to share information about the community care coordination performance
measures that have been developed. The narrative highlights the reasons why these measures are important as
well as their relevance for local and regional provider networks. An overview of the methodological processes
deployed in developing the project’s performance measures such as how measurement tools for each variable
(including a consumer satisfaction survey) were designed, tested, then beta-tested and deployed is provided in
the report. Suggestions for utilization of the measures by community-based organizations similar to the ones in
our study are outlined.
A nationally recognized patient navigation services program (The Pathways Community HUB Model) founded by Drs.
Mark and Sarah Redding of the Community Health Access Project in Mansfield, Ohio, served as a guiding interpretive
presence and framed the basic research design. One of the challenges facing the study team mirrored those of
other participatory research projects with similar site diversity was taking a common model and implementing
it into an array of vastly different settings, while adhering to the fidelity of the model. Our report highlights the
geographical variances in pilot sites and how this is reflective of strategies for disparities reduction.
The collaborative site-based study team acknowledged varying degree of gains in organizational capacity resulting
from information exchanges between participating partners, Westat corporate team members and a national Technical
Expert Panel (TEP) of advisors and stakeholders. Insights from our TEP offer a glimpse into external perspectives
from experts and stakeholders.

Melanie Moyer Swan, MPH, PMP, Program Manager, ECRI, National Guideline Clearinghouse, National
Quality Measures Clearinghouse “The recent literature is beginning to evidence an increasing interest in
care coordination . . . that the trend is identifiable on a national scale and can be viewed as emerging over
the past two to three years.”

Wendy L. Gary, MHA, PGCM, CMQ/OE, Vice President, Quality, Safety and Innovations Division, Delmarva
Foundation for Medical Care “Initiatives like this study are ‘needed for health care reform’, not replacing an
initiative, but it’s a philosophical movement, and paradigm shift.”
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Groundbreaking projects such as NIH-CCCPM hold vast potential to help shape the national dialog on healthcare
reform and finance policy. The effort is congruent with NIH’s focus on eliminating health disparities—particularly
as it relates to vulnerable populations, diseases, and health outcomes. Ultimately, a major purpose of the CCCPM
project is to add to the body of work in health disparities and care coordination in a way that will help to bring about
a comprehensive, viable, and sustainable performance measurement system. It is envisioned that organizations
will embrace the report and relate the experience to their environments in terms of how they might be able to
replicate what we’ve done.
The framework emanating from the CCCPM dissemination plan can be utilized as a roadmap for other research
initiatives and by stakeholders involved in planning culturally competent strategies for healthcare delivery and
partnership development. Since socioeconomic, geographical, and related societal determinates have a bearing
on the efficacy of community care networks, it is envisioned that initiatives such as the CCCPM project can be
transformative in bringing about needed reforms in the healthcare industry. Hopefully, the professional community,
who will take a lead in performance measure development/implementation and the governing and funding bodies
who support them, and, critically, the consumers of services will benefit from the work that we do.
For additional information about the NIH-CCCPM study, or to learn more about how to implement a project of this type in your
own organization or community, please contact The Center for Pathways Community Care Coordination (CPCCC) at the Rockville
Institute for the Advancement of Social Science Research (Rockville Institute) through email at CPCCC@RockvilleInstitute.org.
INTRODUCTION:
What You Will Find in This Report
The Introduction describes the intended audience and how the report is structured. It provides a glossary
of some frequently used terms. It summarizes how the study project evolved from previous efforts and
how the project is in alignment with national efforts to reduce health disparities and improve health
outcomes and well-being. The Key Players: Participating Organizations section summarizes the parties
involved in the study project. Study objectives and methodology are described in the Project Design
and Implementation section that also summarizes the key project activities. This section includes input
from the study site managers – including successes and challenges, as well as suggestions regarding any enhancements, where warranted. The Findings and Results section provides a summary of
data collected and provides personalized reflections and perceptions from the study sites about their
participation in the study as well as recommendations for next steps. In addition, actual results and
findings derived from the study methodology are presented in this section. The Implications and
Conclusions section describes how the study process and results contribute to the field of
standardizing performance measures for community care coordination – particularly for underserved
populations. The Appendix provides summary “snapshots” for each study site.
Intended Audience
The Technical Report is developed primarily for community-based service providers, potential funders, and local
and regional stakeholders. Others who work in different types of health care related settings and organizations
may also find it useful.
Some Frequently Used Terms
Below is a brief explanation of some of the terms and how they are used in this report.
Health Disparities, Social Determinants of Health, Vulnerable Populations
The Healthy People 2020 initiative defines a health disparity as “a particular type of
health difference that is closely linked with social, economic and/or environmental
disadvantage. Health disparities adversely affect groups of people who have
systematically experienced greater obstacles to health based on their racial or
ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive,
sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics
historically linked to discrimination or exclusion.2
According to the World Health Organization, “the social determinants of health are the conditions in which
people are born, grow, live, work and age, including the health system. These circumstances are shaped by the
distribution of money, power and resources at global, national and local levels. The social determinants of health
are mostly responsible for health inequities – the unfair and avoidable differences in health status.”3
Vulnerable populations are defined by race/ethnicity, socioeconomic status, geography, gender, age, disability status, risk status related to sex and gender, and among other populations identified as at-risk for health disparities.4
Interrelationship of these Factors. The interrelationships between an individual’s personal characteristics and his
or her socioeconomic conditions are complex and often influence health status. As an example, if a person does
not have a high school diploma (an individual characteristic), he may be more likely to have a low-paying job (a
socioeconomic condition) that does not offer health insurance. Without health insurance, the person may not have
access to the health care he needs. Thus, the person in this example is vulnerable to poor health outcomes.
Care Coordination and Community Care Coordination
Health care in the United States is often fragmented – many patients receive attention only for individual health
conditions rather than for their overall health. In response to this fragmentation, care coordination is seen as a way
to help improve health care outcomes and quality of life.
There are many definitions of the term, “care coordination.” We will use the following: “Care coordination is the
deliberate organization of patient care activities between two or more participants (including the patient) involved
in a patient’s care to facilitate the appropriate delivery of health care services.”5
Community care coordination works to help address health disparities and (often) the social determinants of
health. Community care coordination processes include:
• Identifying and engaging individuals within their community/home setting;
• Assessing their health and social needs; and
• Connecting them to the health and/or social services they need.
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INTRODUCTION
Community care coordination includes helping individuals navigate and overcome barriers they encounter
between their home and a wide range of institutional structures, such as clinics, hospitals, and human service
agencies (e.g., public assistance, transportation services, and medical assistance). Community care coordination
embraces a holistic approach to addressing the physical, social, and behavioral determinants of health. Collectively,
these are integral to health care interventions needed to achieve personalized care and improved outcomes.6
Pathways Community HUB Model
Designed to produce healthy outcomes using community care coordination, the Pathways Community HUB Model
(hereinafter “Pathways HUB Model”) was developed by physicians Sarah and Mark Redding of the Community
Health Access Project (CHAP) in Mansfield, Ohio. Using individualized care pathways, the Pathways HUB Model
employs community health workers (CHWs) who connect at-risk individuals to care that works (“evidence-based
care”). The approach includes step-by-step actions for resolving problems and tracking outcomes as part of the
process.
Pathway. “Basically, a pathway is a measurement tool or metric focused on achievable outcomes,” explains Sarah
Redding. Pathways can address education, depression, prenatal care, housing, and more. An individual may have
many pathways. A pathway is only complete when an identified problem is solved. For illustration purposes, here
is a “Common Structure” for a pathway, derived from “Connecting Those at Risk to Care.”8
• Initiation Step: Defines the problem and target population. Examples: high-risk pregnancy, asthma in poor
control, lack of medical home.
• Action Step 1. Provide standardized education to the client/family regarding the problem identified.
• Action Step 2. Identify and develop a plan to eliminate identified barriers to receiving services related to
the problem.
• Action Step 3. Assist client/family in identifying qualified provider or agency to resolve identified problem.
This may include scheduling appointment, arranging transportation, submitting forms, etc.
• Action Step 4. Confirm that referral appointment was kept and appropriate services provided. In some
cases, confirm services (medications, therapies, etc.) meet national guidelines. Assist client with followup
recommendations and compliance with treatment plan.
• Completion Step (must be measurable outcome). Confirm resolution or significant improvement of
identified problem (e.g., normal birth weight, control of diabetes, immunizations up to date) OR Confirm
that client is receiving an evidence-based service proven effective in resolving or improving the identified
problem (e.g., smoking cessation program).
HUB or Community HUB. The Pathways Community HUB Model promotes timely, efficient care coordination
through use of a community HUB. A community HUB is a centralized data collection site for tracking and monitoring
health and social services across agencies involved in providing care to the target population. Use of a HUB can
help prevent service duplication and improve efficiency.9
Medical Home
The primary care and patient-centered medical home is a promising model for transforming the organization and
delivery of primary care. Key features of medical homes include team-based care, a robust care coordination and
care management capacity, patient-centered care with strong support for self-management of health, an emphasis
on access and relationships, the use of clinical data to proactively plan care and manage populations, and a systems-based approach to quality and safety. To followup on the description of Pathways, the following schematic
depicts a “Medical Home” Pathway. This is one of the pathways for which data was collected in the NIH-CCCPM
study. See Figure 1.
Introduction: The NIH-CCCPM Technical Report
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Community-Based Participatory Research
Community-Based Participatory Research (CBPR) is a collaborative approach
to research that equitably involves all partners in the research process and
recognizes the unique strengths that each brings. It has the aim of combining
knowledge with action and achieving social change to improve health outcomes
and eliminate health disparities. According to AHRQ, conventional approaches
to research in low-income and minority communities lack the kind of collaboration and communication afforded through CBPR.
How the NIH-CCCPM Study Project Evolved From
Earlier Efforts
The NIH-CCCPM study draws from Westat’s involvement in the Community
Care Coordination Learning Network (CCCLN)13 and its Scorecard Project.14
These provided an underlying foundation for the NIH-CCCPM study.
With a focus on the Pathways HUB Model, the CCCLN was launched in 2008
by the Agency for Healthcare Research and Quality (AHRQ), an entity within
the U.S. Department of Health and Human Services (HHS). Designed to bring
communities together to adopt care coordination models that can reduce
health disparities, the CCCLN provided learning and networking opportunities
for a network consisting of 16 community HUBs in 10 states.
Figure 1.
Community hub: Medical home pathway
CCCLN members came together to create a scorecard prototype to standardize data collection and reporting on
the community level. They developed two measures (Connection to Ongoing Primary Care and Connection to at
least one Social Service). These measures were put into use by a variety of CCCLN-related providers and helped
inform the development of performance measures for the NIH-CCCPM study.
The CCCLN began its vital work early on as a distinct entity under the management of AHRQ. CCCLN’s
groundbreaking legacy later served as the framework for what is now known as the Center for Pathways Community
Care Coordination (CPCCC) that operates at the Rockville Institute for the Advancement of Social Science
Research (Rockville Institute). The five sites in the NIH-CCCPM study were all members of the CCCLN and are
continuing as members of the CPCCC.4
Relationship to Federal Efforts
Several agencies at the Federal level are working toward improving health outcomes for the Nation’s vulnerable
populations. These include HHS and, within HHS, the National Institutes of Health (NIH) and the National Institute
on Minority Health and Health Disparities (NIMHD). The NIH-CCCPM study aligns with the purpose and many of
the efforts of these entities. Below we summarize a few examples of this alignment of purpose.
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INTRODUCTION
NIH, NIMHD and ARRA “Grand Opportunity” Grants
In 2009, the American Recovery and Reinvestment Act (ARRA) provided funding that enabled NIH to create the
“Grand Opportunities” (“GO”) grants program. The “GO” grant program supports high-impact ideas to advance
research, stimulate future growth and investments, and advance public health and healthcare delivery. Of more
than 2,500 applicants for these funds, the NIH-CCCPM project was one of 382 that achieved funding. With its
focus on health disparities and vulnerable communities, the NIH-CCCPM project was one of only eleven grants
awarded through NIMHD’s “Social Determinants of Health Initiative” portion of the GO Grants.17
HHS 2011 Action Plan to Reduce Racial and Ethnic Health Disparities
In its 2011 “Action Plan to Reduce Racial and Ethnic Health Disparities,” HHS indicates that expanding health care
access, data collection, and the use of evidence-based interventions will contribute to health equity for vulnerable
populations.18 One of the strategies of the plan is to reduce disparities in access to primary care services and
care coordination.
Affordable Care Act and Accountable Care Organizations
Signed into law in March 2010, the Affordable Care Act (ACA) mainly addresses the problem of the high number of
uninsured in the United States. The ACA also seeds efforts to reform health care.19 The Accountable Care Organization
(ACO) is one service delivery and financial reform concept promoted in this legislation. An ACO is a tightly linked
group of providers working together to share accountability for the quality and cost of care they provide to a
defined population of patients. Care coordination, performance measures and accountability are only a few of the
concepts that are shared by the ACO and this NIH-CCCPM study.20
Introduction: The NIH-CCCPM Technical Report
5
KEY PLAYERS:
Participating Organizations
Information about the key entities involved in the NIH-CCCPM study is summarized below. This is
followed by additional information about the study sites. The listing is not meant to depict a hierarchical
order of importance. As is inherent in CBPR, all parties were actively and equitably engaged in this
study.
National Institute on Minority Health and Health Disparities (NIMHD)
Within the NIH, NIMHD promotes minority health, conducts and supports research, training, research infrastructure,
fosters emerging programs, disseminates information, and reaches out to minority and other communities
impacted by health disparities. NIMHD, formerly the National Center on Minority Health and Health Disparities, is
the funding agency for the NIH-CCCPM grant.21
Westat
Established in 1963, Westat’s work includes research, evaluation, statistical surveys, and policy analysis. Westat
has an extensive multi-sector research portfolio serving the health and human services, education, transportation,
and energy infrastructure industries. The company has been the lead contract agency in many large-scale studies
sponsored by NIH, AHRQ, and other health and human services agencies.22
The Westat NIH-CCCPM Project Director and Co-Principal Investigator for this study was Brenda A. Leath, MHSA,
PMP. Russ Mardon, PhD, served as Co-Principal Investigator. The study Evaluation Expert was Donna Durant
Atkinson, PhD. Sushama Rajapaksa, MA. was the NIH-CCCPM Project Manager. Maurice C. Johnson, Jr., MPH,
served as Measurement Development & Testing Coordinator and Scott Smith, PhD, was a Westat data analyst with
the study effort. Lisa C. Gary, PhD is a Westat Public Health Scientist and Madeline L. Darden, MSW, served as an
external consultant on the project.
Data Research Associates (DRAs) operated from the various study sites and their role was vital to the study
methodology and implementation. DRAs working on the NIH-CCCPM study included Anne Seifert, MEd (Ohio), Jane
McGinnis, MBA (Nebraska) and Trudy C. Kilian, MS (California), Steven Walton, MBA (Texas), Meghan M. O’Quinn, MHA
(Texas), Mayowa Ijagbemi (Texas), and Natalie Jackson (Indiana).
Technical Expert Panel
The NIH-CCCPM study established a TEP made up of stakeholders and experts selected to represent a diversity
of perspectives and backgrounds. Convening the TEP was important to help ensure transparency and provided
an opportunity to receive many stakeholders’ input throughout the study process. Held at regular intervals, TEP
meetings helped foster communication among a broad base of participants (described below) and facilitate an
exchange of lessons learned and emerging best practices.
For the NIH-CCCPM study, the TEP co-chairs are Veronica Nieva, PhD and Sarah A. Redding, MD, MPH. Dr. Nieva
is a Westat Vice President and serves as the study’s Corporate Monitor & Senior Project Advisor. Dr. Redding is
Director of the Community Health Access Project (CHAP) in Mansfield, Ohio and is the Co-Founder of CHAP’s
Pathways Community HUB Model.
In addition to health care services, other disciplines represented
within the TEP include quality improvement, strategic
planning, managed care, research, and policy analysis.
In addition to CHAP and Westat, organizations represented
in the TEP are the Delmarva Foundation for Medical
Care, Community Care of North Carolina, the National Quality
Measures Clearinghouse, the Central Oklahoma Project Access
Program, CHOICE Regional Health Network of Washington, the
Toledo-Lucas County CareNet Hospital Council of Northwest
Ohio and Healthcare Access Now.
8
KEY PLAYERS
Matrix Knowledge Group
The study project’s information technology contractor is Matrix Knowledge Group. Matrix designed and developed the study’s electronic data collection/reporting tool. They designed and managed the project web portal in
collaboration with Westat management. The portal was used for data transfer (uploads/downloads) and as a
resource for study team members. The portal also featured performance graphic and tabular data displays with
multiple levels of comparison and detail.23
Study Sites
Going from East to West, the five sites that participated in the study are Community Health Access Project (CHAP),
Rural and Urban Access to Health (RUAH), Baylor Community Care (BCC), Lincoln E. D. Connections (LEDC), and
Access El Dorado (ACCEL). The map below, Figure 2, shows the geographic dispersion of the study sites. The
section that follows provides more details about the sites. The rationale for site selection is provided in the Project
Design and Implementation Section of this report. The Appendix also provides more information about each study
site.
Sources of Information about the Sites. Several parts of this document reference information about the study sites
and include comments from study site personnel. Such information was derived from a number of documents
as well as directly from communications with study site personnel. Because the sources of information were so
numerous and varied, citations for each statement about the sites are not provided herein, but are available upon
request.
Figure 2. Map of the Pilot Site Geographical Locations
The Community Health Access
Project (CHAP) is a nonprofit organization that was started in Mansfield,
Ohio in 1999 by physicians Mark
and Sarah Redding. CHAP’s mission
is “To eliminate health and social
disparities in our community by finding those at risk, connecting them to
care and measuring the outcomes.
We believe all communities can be
transformed through the work of
community health workers and the
creation of community HUBs – an accountable care coordination delivery
system.”
In Richland and Knox counties in Ohio, with a focus on low-income, Medicaid eligible populations, each year
CHAP serves approximately 1,200 pregnant and post-partum women and children ages 0-3. CHAP’s co-founders
also provide technical assistance across the nation in the development and implementation of programs and
services that are in alignment with the Pathways HUB Model.
Partnerships. While CHAP was the sole party that provided access to the data and patients interviewed for this
study, CHAP’s work regularly involves collaboration with various community stakeholders. The partners involved depend upon the Pathway(s) or other projects that are the focus of a particular effort. For instance in their development
of Pathways within the Children’s Community Health Access Initiative, CHAP collaborated with more than 70
different health and social service agencies across Richland County.
9
Rural And Urban Access To Health
Established in 2000, Rural and Urban Access to Health (RUAH), is a collaborative program sponsored by St.
Vincent Health, which is Indiana’s largest healthcare employer. Main goals of RUAH include increased access to
medical and social services and reduced inappropriate care.
RUAH provides safety net services in eight counties in central Indiana. In Madison County, where the NIH-CCCPM
study took place, approximately 1,400 persons are served annually. While the community is predominantly White and
non-Hispanic, RUAH serves a more diverse clientele, with an over-representation of Hispanic/Latino participants.
Partnerships. Organizations that participated in the study and provided access to data are Saint John’s Hospital,
St. Vincent Health Information System Team, the Madison County Community Hub, and the United Way Community
Access Network. RUAH is managed by St. Vincent Health. Eight of St. Vincent’s hospitals are members of RUAH,
with two of these being in Madison County.
Baylor Community Care (BCC) served as a study site in the Dallas-Fort Worth “metroplex” area of Texas. BCC is a
project of the Baylor Health Care System – a system that served more than 2.8 million people in 2011.
BCC seeks to provide quality healthcare and a compassionate medical home to patients and families that do not
have access to a primary care physician. A primary goal is that underserved patients will experience fewer health
disparities and require less frequent utilization of hospital services.
In 2011-2012, the community care navigation program worked with 1,200 patients, and successfully connected
806 patients to a medical home. The BCC clinics that become medical homes for these patients served 12,000
patients. Of all sites, this community’s demographics were the most racially and ethnically diverse, with 65.3 percent
of the population being White and 27.5 percent being of Hispanic or Latino origin.
Partnerships. The Baylor Health Care System was the sole party that provided access to the data and patients
interviewed for this study. The BCC program operates within four Baylor hospital campuses and 10 clinics. Many
of these clinics are operated in association with community-based service providers as well as Baylor-employed
staff. Baylor-paid CHWs that staff the BCC also work very closely with community providers in helping patients
access and retain needed healthcare and barrier relief needs.
Lincoln E. D. Connections
Lincoln E. D. Connections (LEDC or “ED Connections”) is a collaborative program of two hospital-based systems in
Lincoln, Nebraska – BryanLGH and Saint Elizabeth Regional Medical Center. BryanLGH, the successor to Lincoln
General Hospital, is a not-for-profit, locally owned healthcare organization with two acute-care facilities and several
outpatient clinics. The organization is undergoing a name change to Bryan Medical Center, in September 2012.
Saint Elizabeth Regional Medical Center is a nonprofit, faith-based medical center and member of Catholic Health
Initiatives, the third largest Catholic healthcare system in the country with a presence in 19 states.
Initiated in 2005, the purpose of ED Connections is to serve the community’s most vulnerable patients who
repeatedly use the emergency department (ED) for non-emergency purposes. The primary goal of the program is
to eliminate barriers to health care, such as transportation, medication costs, financial difficulties.
Approximately 4,500 individuals qualify for enrollment annually. Annually, approximately 500 to 600 are served.
Within Lincoln’s predominantly White population, the majority of current participants, as of this writing, are White
women age 25 – 45.
10
KEY PLAYERS
Partnerships. Organizations that participated in the study and provided access to data include the aforementioned two hospital systems. De-identified patient data came from both hospitals for the purposes of this study.
Oversight of the LEDC program is provided by a community advisory council and the program is directly supervised by both ED Directors of the hospitals. LEDC regularly collaborates with more than 45 community social service agencies and medical providers. These include Lancaster County Medical Society, Center for People in Need,
People’s Health Center, Matt Talbot Kitchen, Lancaster County Health Department and many other agencies, local
pharmacies, and private health care providers.
Access El Dorado
Access El Dorado, popularly known as ACCEL, is a community-wide collaborative among public and private
agencies in predominantly rural El Dorado County California. Formed in 2004, ACCEL’s mission is to (1) seek to
create healthier communities, especially within vulnerable populations, (2) identify specific barriers (especially
access!) to a healthy community and (3) develop systematic improvements that include all partners and serve the
entire community.
In 2011, over 1,200 patients of all ages were served across seven Pathways. While persons of Hispanic or Latino
origin are characteristic of 12.3 percent of the county’s population, they are over-represented in ACCEL’s clientele.
Partnerships. Collaborative partners who participated in the study and provided access to data include ACCEL’s
health collaborative members – the El Dorado County Health and Services Agency’s Public Health and Mental
Health Divisions, Barton Healthcare System and Marshall Medical Center (as well as their affiliated medical providers and rural clinics), El Dorado County Community Health Center (a Federally Qualified Health Clinic), Shingle
Springs Health and Wellness Center (formerly Shingle Springs Tribal Health Program). One other member of the
collaborative, Western Sierra Medical Center, was too new to the collaborative to be able to provide data or patients for the study.
11
PROJECT DESIGN AND IMPLEMENTATION
This section summarizes how the study project was designed and implemented. Key activities are
discussed. A summary of how some of the study’s administrative and technical challenges were addressed is provided as well.
Project Objectives and Methodology
Objectives
Four major objectives for this project were to:
 Refine the conceptual framework for the Pathways HUB Model and identify relevant measurement
domains for assessing quality and outcomes.
 Draft detailed specifications for selected care coordination quality and outcomes measures.
 Assess the relevance, feasibility, validity and reliability of the measures through a pilot test at five
pilot sites.
 Finalize the measure specifications and develop documentation, data collection, and reporting
tools to facilitate their use.
Methodology - Community Based Participatory Research (CBPR)
The CBPR methods used in the NIH-CCCPM project incorporated the knowledge and experience of the Westat
project staff, the TEP, the study site personnel and the DRAs that collected data and interviewed patients. This
“CBPR Team” acted as a real-world “learning laboratory.” This team approach helped ensure that the performance
measures created were relevant to the community and that the use of standardized performance measures could
be implemented in diverse community settings.
Transparency. The CBPR approach helped ensure that the study activities were transparent to key stakeholders.
Monthly teleconferences were held with Westat, study sites, and DRAs. Twice monthly teleconferences were held
with the DRAs and the Westat project team. In-person meetings were also held several times during the study.
Learning and Sharing through the CBPR Process. These interactions provided a collaborative forum in which
to learn about and monitor the status of work in progress, to highlight areas of concern for timely action, and to
update the completion status of scheduled activities. Participant feedback and reciprocal dialog was a fundamental
component. Such learning and sharing opportunities were helpful in gaining insight into such issues as:
14
PROJECT DESIGN
 Timely approval process - It is necessary to understand variations in Institutional Review Board, data
use and business associate agreement requirements, across settings (i.e., hospitals, healthcare
networks). Across sites, this involved different timeframes and procedures to secure necessary
approvals protecting patient privacy and ensuring security of information sharing.
 Building consensus - The development of clear definitions and specifications for each measure need to
be through a systematic approach that is understood and applied uniformly, but also in consideration of
site differences.
 Timely approval of patient surveys - Surveys to assess patient experience are a critical study
component.
 Collecting time sensitive data - The need for time sensitivity in data collection is important, particularly
among programs having shorter patient encounter timeframes.
Activities
Below is a list of the key activities conducted during the study. The narrative that follows summarizes some of
these activities and provides input from the study sites.










Site selection;
Creating the conceptual model, selecting, defining, and refining performance measures;
Hiring, training, deployment, and coordination of DRAs;
Gaining institutional/agency permissions for access to participants and their data;
Developing performance measure definitions and data collection protocols;
Development of an electronic data collection tool and web portal;
Developing the Patient/Client Survey and its administration protocol;
Testing data collection instruments and processes;
Collecting data; and
Cleaning and analyzing data.
Site Selection
NIH-CCCPM study site selection was based on a number of factors. All sites were already collaborators with
Westat through their involvement in the CCCLN. Each of the sites had adapted some facets of the Pathways HUB
Model and each had a central HUB or a leading project/program that coordinated their pathways. The sites were
spread across the United States, were in both rural and urban settings, and were managed by different types of
entities. Furthermore, with the exception that each site served vulnerable populations, care coordination methods,
pathway definitions and participant characteristics were not the same. This diversity was intentional, leading
to a better view of how performance measures might fit over a broad spectrum of venues, processes, and
populations.
Conceptual Model, Selecting, Defining and Refining Performance Measures
A care coordination conceptual model was completed. It outlined processes that were common across most
pathways – such as enrollment, participation, completion of involvement, and documentation of outcomes.
Subsequently, the Westat project team drafted detailed measure specifications, in collaboration with other CBPR
team members. The intention was to identify pathway domains (dimensions of performance) and draft performance
measures that were relevant, applicable, and in common use across multiple study sites.
15
It was important to ensure that the measures, protocols and processes were scientifically sound. Literature reviews of
previous measures and measure definitions, data collection, and patient survey efforts were conducted. Consultation
with subject matter experts and other key stakeholders helped inform this step.
The participation of the sites in the measure selection process was essential. The measures had to be operationally
feasible, relevant, and of interest and value. In considering particular measures, the sites considered whether they
already captured the data related to the measure, if not, could they envision ways to capture it and/or could they
envision ways to improve how they capture such data. They were asked to consider if the data were worth capturing.
That is, did it help inform their service delivery system/costs/outcomes/other metrics?
Standardization of metrics across sites has always been perceived to be difficult—a premise confirmed by this
effort. Below are some comments from study site managers regarding this process.
“Based on the way our services are provided, defining ‘enrollment,’ selecting an enrollment date and defining
‘Pathway completion,’ was challenging.”
“If you had asked me what I thought the biggest realization would be is that it would be really challenging to
establish metrics across different sites. And, frankly, that was confirmed.”
Reaching consensus on aspects of care coordination that should be integral to any program required looking into
how a measure could be uniformly applied. This required objectivity across the project team. This helped ensure
that such elements would be identified for measure development regardless of their implementation in participating
sites.
Engagement of Data Research Associates
Five Data Research Associates (DRAs) were engaged – one for each site. They helped refine the data collection
processes and collected information from participant records as well as from Patient/Client Surveys. They entered
the data into the study’s electronic database. The DRAs also helped provide local insights as part of the CBPR
team process.
In addition to the aforementioned monthly conference calls, several in-person training, networking, and information
sharing sessions were held with the DRAs. Westat-provided training included regulations and practices regarding
data security and privacy protection. DRAs were also required to meet any local privacy and security requirements.
Study Site Contributions to DRA Success. Coordination of activities was managed by Westat, but the activities
concerning data collection or access to patients had to be managed in accordance with the operations of each
site. Consequently, each DRA met often with one or more study site stakeholders.
At all sites, the DRA was provided wide access to information and benefitted from knowledgeable and supportive
study site assistance. Study site personnel helped the DRA understand how to use local documentation systems
and helped clarify terms and processes. In the sites that participated in the Patient/Client Survey, local personnel
also helped locate current contact information for the potential interviewee and helped with other logistics.
Gaining Permissions to Access Records and Participants
For each site, officials had to approve DRA access to patient data and to patients. Site managers noted that strong
coordination is needed between study managers and entities from which permissions were to be obtained (e.g.,
research councils, Institutional Review Boards).
There are differences in how each entity determines such authorizations. The timing of obtaining permissions and
the particular process for doing so resulted in one of the sites not being able to participate in the Patient/Client
Survey part of the study. As the site manager put it, “Hospitals need to see everything clearly defined, ‘everybody’s
ducks in a row at the onset.”
16
PROJECT DESIGN
Testing the Measures, Protocols and Processes
Upon being oriented to the drafted data collection protocols, the DRAs tried out the intended methods for
accomplishing the tasks. The focus was on determining whether the tools and procedures would correspond to
how business was normally conducted at the study sites. The DRAs also tested the process of saving data to the
study database and uploading them to the project web portal.
Feedback from the data collectors (DRAs) and the data “owners” (the sites) on the processes and instruments
were considered in revising the instruments and protocols. Other CBPR team member input was also considered
– including that from Westat personnel and the TEP.
Collecting Client Services Data
In their regular operations, sites used both paper-based and electronic data collection instruments to record and
monitor service delivery. As noted earlier, DRAs had to learn how to use these tools. In some cases, several different
databases had to be accessed in order to obtain information for the study.
Most sites agreed that it wasn’t always possible to collect complete data due to “human error” issues, as one site
manager put it, At times, data were missing, incomplete or inconsistent in the files from which the
DRA was extracting information. As another site manager put it, “This process helped show us
areas where we need to tighten up.”
Different Measures in Different Sites. The types of services data that were routinely collected varied across
study sites. Fewer overall records were collected for certain performance measures since some sites could not
report services data for all of the performance measures.
“We did not participate in some of the measures because our program does not collect that
information. For instance, we aren’t paid for
reducing ED use, so we do not track it,” said one
site manager.
However, a study site manager acknowledged that that sites were not expected to use
measures and methods that wouldn’t fit with
their programs, in order to participate in the
study. “They didn’t tell us to re-do our program,”
he said.
Administering and Collecting Patient/Client Feedback
Gathering input from participants or their parents (in the case of minors) was important. A report entitled
“Transforming Patient Engagement,” had this to say about the value of such surveys:
“First, there is no better measure of patient engagement than assessing individual patients’ experiences with
their care. We know from research that better patient experience yields better health outcomes, and experience
surveys are the best tools we have for assessing the impact of care for the highest-need, highest-cost
patients.”25
The CBPR approach helped immensely in the creation of the Patient Surveys. For example, CBPR team members
helped devise ways to shorten the initial Patient/Client Survey, to enhance relevance based on operations at the
sites and to develop different modes of survey administration. CBPR team members also helped identify the need
for a Spanish-language survey.
17
Reaching Survey Candidates. One site noted that the number of completed Patient/Client Surveys was
relatively small, and they suggested this outcome was due to the difficulty with reaching potential interviewees. The
population served was transient, with many potential interviewees moving in and out of the area. Many only
had cell phones, but couldn’t afford to use cell phone minutes on a call to complete the survey. To protect client
privacy, if an interviewee was not reached, a callback number was not provided. This might have resulted in fewer
responses. Also, when a DRA made a call, the respondent might not have recognized the number or might have
noted it as a “blocked call.” This might have reduced the response rate.
Survey Responses – Possible Site-Specific Differences. Some sites felt that the particular ways that they
conduct business might have affected Patient/Client Survey results. For instance, the survey asked to rate the help
they received from the community care coordination program. Some sites were concerned that interviewees may
not have been aware which provider helped them.
Our short service delivery period and the often chaotic setting in which patients are served may have affected
our Patient/Client Survey responses. Huge challenges are inherent in the discharge process. We’re just one
of many talking to the patient, and so they may not remember the guidance our CHWs are trying to provide,”
indicated one site manager.
Another site manager related that patients are not always aware of their HUB as providing them with services.
They are more aware of the individual service provider within the HUB (clinic, public health department, etc.) and
identified with that provider’s staff.
Data Cleaning and Analysis
Once data collection began, the critically intense phase of “data cleaning” was initiated. Westat team members
looked at the data collected, noted discrepancies and missing fields, queried the DRAs, and completed other
“logic checks.” The resultant information was compiled and analyzed as described in the next section.
FINDINGS AND RESULTS
The Findings and Results section provides quantitative data on the demographics of the clients served
in this study and on the implementation of the performance measures by the study sites. The data
sources for the quantitative section include a survey of clients served as well as nonsurvey data from
institutional databases on client services utilization, which often include basic client background
information e.g., age. All data were de-identified. In addition, this section provides an overview of qualitative information which reflects the perspectives of the study sites on the study implementation and
areas for future study. Before the discussion of quantitative and qualitative results, we first present the
list of community care coordination performance measures which should be shared with the public
(Table 1). This list of measures is one of the primary outputs from this study.
Part 1. Performance Measures for Community Care Coordination
Table 1. Community Care Coordination Measurement Domains, Pathways Components, and Measures
Measurement Domain
Pathways Component
Measure Name (Data Source)
Enrollment Services
Enrolling in Community
Care Coordination
Timeliness of Contacting, Screening, and
Enrolling Prospective Clients (Non-Survey)
Appropriate coordination of
health care
Identifying and Reducing Barriers
to Care
Developing and Maintaining a Care Coordination Plan (NonSurvey)
Health Care Referral Scheduling (Non-Survey)
Health Care Referral Completion (Non-Survey)
Client Received Needed Help form CHW to
Coordinate Health Services (Survey: Q3b)
Client Received CHW Help Getting Medicine (Survey: Q7)
Appropriate coordination
of support services
Identifying and Reducing
Barriers to Care
Developing and Maintaining a Care Coordination Plan
(Non-Survey)
Social or Support Services Referral Scheduling
(Non-Survey)
Social or Support Services Referral Completion
(Non-Survey)
Client Received Needed Help form CHW to
Coordinate Social or Support Services (Survey: 12b)
Evidence-based
processes of care
Confirming the Delivery of
Evidence-Based Care
Pathways Completions (Non-Survey)
Obtaining needed
support services
Confirming the Delivery of
Evidence-Based Care
Health outcomes
Documenting Outcomes
Utilization/cost savings
Documenting Outcomes
Emergency Department (ED) Use (Non-Survey)
Emergency Department (ED) Visits Post Care Coordination
Completion (Non-Survey)
Hospitalization Post Care Coordination
Completion (Non-Survey)
Client experience of
care coordination
Cross-cutting
Client Satisfaction With Health Care Coordination
by CHW (Survey: Q4)
Client Satisfaction With Social Support Services
Care Coordination (Survey: Q13)
Frequency of Communication Between the Client
and His/Her CHW (Survey: Q15)
Client’s Recommendation of His/Her CHW (Survey: Q16)
Client’s Empowerment to Coordinate Health Care Services
(Survey: Q19)
Client Empowerment to Coordinate Social or Support Services
(Survey: Q20)
20
Measurement Domain
Pathways Component
Measure Name (Data Source)
Cultural competence
Cross-cutting
CHW’s Consideration of Client’s Values and Beliefs
(Survey: Q17)
Delay in Receipt of Services due to Client’s Communication
or Cultural Problems with Service Provider (Survey: Q18)
Shared decision making
Cross-cutting
Documentation of Client Participation in Care Coordination
Plan Development (Non-Survey)
Client Awareness of Care Coordination Plan Development
(Survey: Q1)
CHW Engages Client in Care Coordination Plan Development
(Survey: Q2)
Health-related quality of life
Cross-cutting
Client’s Self Rated Health (Survey: Q8)
Client’s Report of Unhealthy Days for Physical Health
(Survey: Q9)
Client’s Report of Unhealthy Days for Mental Health
(Survey: Q10)
Client’s Report of Unhealthy Days for Usual Activity
(Survey: Q11))
Part 2. Results From the Quantitative Data
The diversity among sites is evident in the wide array of clients represented in the data (Tables 2 and 3). Males
account for more than one-half (55.6%) of clients. More than one-third of clients are under the age of 18 (42.3%);
20.8 percent range in age from 50 to 65. Close to 15 percent of clients are Black/African-American (14.4%) and
10 percent (10.2%) are solely of Hispanic/Latino or Spanish origin. Furthermore, English is the primary language
of three-quarters of clients (75.4%). In particular, a significant proportion of sociodemographic data are unknown.
One site only began collecting this data half way through the project while several other sites never consistently
collected this information.
21
Table 2.
Client characteristics by site
SITE
Characteristic
Site A
Site B
Site C
Site D
Site E
Total
765
616
140
371
600
2,492
0 to less than 1
229
0
0
0
2
231
1-18
382
0
8
11
5
406
19-29
19
1
21
8
87
136
30-49
69
0
69
1
282
421
50-64
58
0
27
0
199
284
65 and Over
4
0
2
0
22
28
Unknown
4
615
13
351
3
986
Male
367
356
61
240
87
1111
Female
392
229
79
130
57
887
Unknown
6
31
0
1
456
494
Black or African American
0
16
24
153
48
241
Hispanic/Latino
135
11
4
2
18
170
White
309
534
96
190
49
1178
Other
27
2
13
26
15
83
Unknown
294
53
3
0
470
820
Number of Clients
Age
Gender
Race/Ethnicity
Four of the five sites collected survey data using three different administration modes—mail, telephone, and
in-person—resulting in 208 complete surveys. The overall response rate across all participating sites was 48.5
percent. The numbers of completed surveys by mode were: 27.2 percent mail, 62.2 percent telephone, and 9.9
percent in-person administration. Three surveys were administered in Spanish and the remaining surveys were
administered in English. There were almost as many adult surveys (54.3%) completed as there were surveys
completed by a family member or legal guardian for their children who received services.
22
Table 3.
Additional client characteristics by site
SITE
Characteristic
Number of Clients
Site A
Site B
Site C
Site D
Site E
Total
765
616
140
371
600
2492
628
614
140
371
125
1878
Medicaid
292
13
22
366
1
694
Uninsured
0
272
93
1
0
366
Other
108
36
25
4
42
215
Unknown
365
295
0
0
557
1217
0
256
126
104
0
486
0
41
13
264
0
318
765
319
1
3
600
1688
English as Primary
Language
Yes
Insurance Status
Income (Household)
100% FPL
Greater than 100% FPL but
no more than 200% FPL
Unknown
Results – Sites’ Use of the Community Care Coordination Performance Measures
Enrollment Services Domain
Timeliness of Contacting, Screening, and Enrolling Prospective Clients (3 sites collected data)
This measure assesses the timeliness of contacting, screening, and enrolling clients into community care
coordination when prospective clients come to the attention of the care coordination organization from external
sources. More than half (56.8%) of prospective clients were contacted, screening, and enrolled within 14 days
of being referred to the care coordination organization, while an additional 11 percent of prospective clients
were enrolled within 60 days of referral. Conversely, almost one-third (32.2%) of clients were never enrolled in
care coordination. Of those not enrolled in a care coordination, more than half (59.4%) were contacted by a
CHW, but refused services.
Appropriate Coordination of Health Care Domain
A comprehensive care coordination plan specifies and prioritizes actions for achieving the desired health endpoint,
including connections to needed health care services, and connections to needed social or support services. The
care coordination plan should be developed in conjunction with the client on a timely basis after enrollment, and
updated regularly thereafter. This measure is included in both the Appropriate Coordination of Health Care domain
and the Appropriate Coordination of Support Services domain since a comprehensive care coordination plan
addresses both health care and social or support service needs.
We experienced multiple challenges measuring the development and maintenance of a care coordination plan.
Initial review of the data during the collection period revealed few records complying with these activities. Follow
up with data collection staff uncovered that many sites reported care plans under development, yet did not actively
document this task—a requirement per measure specifications. Other sites did not do formal care coordination
planning as part of their normal process. As a result there were insufficient pilot test data to report on this measure.
23
HealthCare Referral Scheduling (4 sites collected data)
The health care referral scheduling measure indicates the time it takes from when a referral is made to the time that
the health care provider is contacted and the appointment is placed on their calendar. A large majority (86.9%)
of referrals were scheduled within seven days. The rate of referral scheduling within seven days was higher for
primary care and developmental screening referrals, and lower for mental/behavioral health care and other
specialty care. In part this difference is due to differences in how sites schedule referrals. Of the 81 clients not scheduled for a referral, 50 were unreachable afHeal
He
althcare Referral Completion
ter initial contact; there were insufficient records for 19 other
(Number of referrals = 1187
(Nu
187))
potential clients.
Number Completed Within 14
Days
Days
Days
Days
Number Completed Later 60
Days
Number Not Completed
Health Care Referral Completion (4 sites collected data)
A referral is completed when the indicated health care service
22%
is delivered. For services that require multiple visits such as
9%
7%
prenatal care, we consider the referral to be completed at the
8% 14%
time of the first visit to the health care provider. The number
of referrals for this measure differed from the number for the
Figure 3. Healthcare referral completion
referral scheduling measure because some health care services
do not require appointments, and because the measurement time periods were different in the pilot test to allow
sufficient time for referrals to be completed.
41%
More than 40 percent of referrals (40.8%, n = 1,157) were completed within 14 days and nearly two-thirds
were completed within 30 days (Figure 3). Most of these completed referrals were for primary care visits. The
completion rates were lower for mental and behavioral health services as well as other types of specialty care.
Of the 101 clients who did not complete their referral, more than half (58.4%) did not appear for a scheduled
appointment. This measure highlighted a documentation challenge for some of the sites. The measure specification requires confirmation from the health care provider to demonstrate the completion of the referral. Yet in
practice, some sites relied on client confirmation.
Survey items
Two of the measures in this domain were estimated from the client survey. One of these measures is entitled
Client Received Needed Help from CHW to Coordinate Health Services. This measure is based on clients who
reported needing help coordinating health care services. According to the survey results, more than 6 in 10
(61.7%, n = 201) respondents needed health care in the past 2 months. Of those respondents, fewer than half
needed help coordinating their care (40.5%, n = 121). Out of this number, CHWs helped coordinate healthcare
services for the overwhelming majority of those in need (93.8%, n = 48). The second survey measure was Client
Received CHW Health Getting Medicine. During the previous two months, just less than half (43.6%, n=204) of
respondents were prescribed medicine other than vitamins. Only 22.7 percent (n = 88) needed help getting the
medicine. A majority (72.2%, n = 18) of those respondents received needed help from their CHW getting their
prescription filled.
Appropriate Coordination of Support Services Domain
As mentioned in the Appropriate Coordination of Health Care section, there were insufficient pilot test data to
report on this measure.
Social or Support Services Referral Scheduling (2 sites collected data)
The social or support services referral scheduling measure indicates the time it takes from when a referral is
made to the time that the service provider is contacted and the appointment is placed on their calendar. Many
social or support service providers do not require appointments so this measure is not applicable to those
services. Of the social or support services where an appointment was necessary, an overwhelming majority
(99.3%; n = 457) of them were scheduled within seven days of initial contact. Two sites were included in this
24
measure; however, one site accounted for a large proportion of records (98.2%). In particular, this site had a
specific Pathway that many of their clients in their program were eligible for – obtaining health insurance.
Social or Support Services Referral Completion (3 sites collected data)
Although two sites collected scheduling data, three
Social or Sup
pport Services
sites collected completion data. Only one in four cliReferral Completion
ents (27.7% n=573) accessed social services within fourNumber of Referrals = 678
teen days after a referral, while an additional 20 percent
received the service within 30 days. Still, more than threeNumber Completed Within 14 Days
28%
fourths (75.3%) of social services referrals were ultimately
Number Completed Within 30 Days
20%
completed (Figure 4). Many of the care coordination organizaNumber Completed Within 45 Days
tions provide social or support services themselves. The rate
16%
Number Completed Within 60 Days
25%
5% 6%
of completion for these internal referrals, which made up the
Number Completed Later than 60 Days
majority of the referrals, was higher with half of the referrals
Number Not Completed
completed within 30 days. The completion rate for referrals
Figure 4. Social or support services referral completion
to external service providers was lower, with only 40 percent
completed within 30 days, and one-third not completed at all. The most common reason for failure to complete
referrals for social or support services was loss of contact with the client (48.4%).
The most common social or support service referrals were for health insurance enrollment, for which 55 percent
of the referrals were completed within 30 days, and parent education services, for which 42 percent of the referrals were completed within 30 days.
Survey items
There was one survey measure in this domain, Client Received Needed Help from CHW to Coordinate Social or
Support Services. To be eligible for this measure, the client must have reported needing health coordinating social or support services. Close to half of respondents (45.0%, n = 202) needed social or support services in the
past two months. Of those who needed social or support services, three in four (74.2%, n=89) also needed help
coordinating those services. CHWs provided help coordinating social or support services for a majority (92.3%,
n = 65) of those respondents who reported needing it.
Evidence-Based Processes of Care Domain
Pathways Completions (4 sites collected data)
The Pathways Completions measure is the sole measure in three domains: Evidence-Based Processes of Care,
Obtaining Needed Support Services, and Health Outcomes. While a conceptually simple measure, its versatility
lies in the robustness of the Pathways Model itself. A Pathway is any structured workflow that guides the delivery of care coordination services aimed at achieving a specific health outcome or process goal. A Pathway must
have specified client or patient eligibility criteria, a defined initiation step, appropriate intermediate steps and
milestones, and a verifiable completion criterion indicating the completion of that Pathway. Depending upon
the type of Pathway, its completion may represent the delivery of an evidence-based health care service (e.g.,
connecting a client to a medical home or ensuring that a client is up to date on immunizations), the connection
to a needed social or support service (e.g., parent education or family planning services) or the achievement of
a defined health outcome (e.g., a healthy birthweight baby).
Of the nearly 2,000 Pathways initiated (1,929), 86.2 percent were completed. The completion rate was lower for
some Pathways such health insurance enrollment, connection to mental health/substance abuse services, and
the medical home Pathway, while it was higher for the well-child checkup and the parent education Pathways.
The average duration of completed Pathways also varied greatly ranging from 12.7 days (Newborn visit) to
279.4 days (Other Healthcare). The most common reason for non-complete Pathways was that the client was
non-compliant or lost to follow-up (8.3% of non-completed Pathways).
25
Obtaining Needed Support Services Domain
See the Evidence-Based Processes of Care domain.
Health Outcomes Domain
See the Evidence-Based Processes of Care domain.
Utilization/Cost Savings Domain
Emergency Department (ED) Use
Emergency Department (ED) Visits Post Care Coordination Completion
Hospitalization Post Care Coordination Completion
We collected limited data from one site on Emergency Department (ED) use, and visits to an ED or hospitalization within 90 days of post care coordination completion. Other sites were not able to field these measures because of difficulties collecting the necessary data on utilization of these services. Two sites were not affiliated
with a hospital system and, therefore, would have needed to put in place data sharing agreements to get the
data, and they were unable to do this for this study. Two institutions had access to ED and hospital data yet
did not have the necessary time and/or resources to gather data. A key factor was the lack of synergy between
care coordination sites and their corresponding hospitals data systems.
Survey items
Although there are no survey measures which analyzed utilization/cost savings, the survey did provide questions
which provide information relevant to this domain. More than one in three (42.2%, n = 45) respondents who
received help coordinating their health care services visited the emergency department (ED) in their past two
months. The last time respondents visited the ED in their past two months, nearly four in five (89.5%; n = 19)
believed it was for an emergency (based on self-reported data). It is possible that trained health professionals
may conclude that some of these ED visits were for a non-emergency concern.
Client Experience of Care Coordination Domain
Survey items
There were six survey measures in this domain.
• One measure was Client Satisfaction with Health Care Coordination. An overwhelming majority (97.9%;
n = 48) of respondents were either ‘Satisfied’ or ‘Very satisfied’ with the coordination of their health care
by their CHW.
26
•
All of the respondents (n = 54) reported being ‘Satisfied’ or ‘Very satisfied’ on the Client Satisfaction with
Social or Support Services Coordination measure.
•
A large majority (86.1%) of respondents were ‘Definitely’ willing to recommend their CHW to friends and family.
•
With respect to Frequency of Communication Between the Client and His/Her CHW, almost nine in ten
(87.9%, n = 198) respondents were either ‘Always’ or ‘Usually’ able to get in touch with their CHW when
they needed to, although 10.6 percent were either ‘Never’ or ‘Rarely’ able to do so.
•
Approximately half of respondents reported feeling Empowerment to Coordinate Health Care Services
(53.2%, n = 203) or Social or Support Services (53.0%, n = 202) after spending at least two months with
their CHW.
Cultural Competence Domain
Survey items
There were two survey measures in this domain. A large majority of respondents (91.4%, n = 196) believed
their CHW Always, Usually, or Sometimes thought about their beliefs, values, and traditions when working with
them. A full 79.1 percent responded ‘Always’ on this measure. Another measure of cultural competence is the
CHW’s ability to identify and address cultural or language barriers their clients may encounter in their interaction
with health care or social or support service providers. During the past two months, only a small portion (2.0%,
n = 202) of respondents reported a Delay in the Receipt of Services due to Client Communication or Cultural
Problems with Service Providers.
Shared Decision Making Domain
Documentation of Client Participation in Care Coordination Plan Development
Similar to the Developing and Maintaining a Care Coordination Plan measure, we experienced challenges
collecting the Documentation of Client Participation in Care Coordination Plan Development measure. In part
this was because four out of the five care coordination sites did not routinely document client participation in
care coordination plan development. Also, some of the clients were long-time clients who may have had an
initial care coordination plan developed in the past. Because of these measurement difficulties, we changed the
specification of this measure in the final measure set to reflect only new clients to measure their participation in
their initial care plan development.
Survey items
There were two survey measures in this domain. The first was Client Awareness of Care Coordination Plan
Development. Approximately 6 in 10 respondents (58.7%) were aware that their CHW developed a plan for
them; and additional 2.4% believed someone else with the program had done so. A large majority (91.7%) of
respondents thought their CHW used their ideas when developing their care coordination plan, reflecting high
scores on the measure CHW Engages Client in Care Coordination Plan Development.
Health-Related Quality of Life Domain
Survey items
To assess health-related quality of life, we use the Centers for Disease Control and Prevention (CDC)
“Health Days” measures. A large number (82.5%) of respondents self-reported their health status as either
“Excellent,” “Very Good,” or ‘Good’ (Figure 5). Furthermore, nearly two-thirds of respondents (63.5%) did not
have any unhealthy physical or mental days in the previous two months. On average, respondents who reported
at least one unhealthy physical or mental day in the past two months suffered 14.0 physically unhealthy days
and 24.1 mentally unhealthy days. By comparison, the CDC in 2008 reported a national average of 3.6 physically
unhealthy and 3.4 mentally unhealthy days in the past 30 days. Of the 32 respondents who suffered at least 1
day of poor mental health in their previous 2 months, 21 also suffered at
Client Overall Health Status Within
least 1 day of poor physical health during the same period of time.
Past 2 Months
(N = 206)
More than one in four adults (28.3 %) and one in ten children (10.5%)
reported at least one day in the past 60 they were unable to do their
54%
usual activities such as self-care, work, or recreation at least one day
Excellent or V
Very Good
in the past two months reported with an average of 15.78 and 5.2 days
Good
lost, respectively. Nationally, only 5.5 percent of adults and 7.3 percent
18%
Fair or Poor
28%
of children reported a limitation of activity. In sum, pilot test respondents
were more likely to report at least one mentally or physically unhealthy
Figure 5.
Client overall health status within past 2 months
day, more unhealthy days, and be unable to do their usual activities
compared to national norms.1
27
Part 3. Results From the Qualitative Data
Study Site Managers: Comments, Perspectives on Study Participation
Comments about the findings, the benefits of being involved, and suggested study improvements are provided in this
section. Recommendations for improving study design or for moving to the next step of standardizing performance
measures are discussed as well. The comments revealed four main themes.




Site Operations Continued as Usual;
There are Benefits to Participation in a National Study;
Study Findings Mirror Our Local Analysis and Add to the Evidence Base; and
The Study Provided Numerous Other Benefits.
Theme 1: Site Operations Continued as Usual
According to interviews with study site managers, being involved in the study had no major impact on how each
site conducted its normal operations. Business went on “as usual,” once the Program obtained clearances so
that DRAs could access data and talk to patients (or their parents/caregivers, in the case of minors).
Theme 2: There are Benefits to Participation in a National Study
Study sites indicated that being involved in a national study, especially an NIH study, could help build credibility
and support growth. Selected site manager comments are provided below.
“Being one of the five study sites allowed us to gain national recognition for the work that we do. This is not
always possible for programs such as ours that are located in small and rural communities.”
“The fact that (our site) was involved in this national study was mentioned in every single grant application that
we wrote,” said the site manager. “It helped highlight the fact that, “(our site), a relatively small operation in this
small, rural county, can still make a very important impact in the health care frontier.”
“We’re hoping that this study will generate interest among national and local funders to help us spotlight the
need for funding of crisis and barrier relief.”
“We’re proud of the fact that we were able to help define some of these elements. We were grateful to participate
in this NIH rigorous, groundbreaking study and want to help drive this kind of effort forward.”
28
Theme 3: Study Findings Mirror Our Local Analysis and Add to the Evidence
Base
All sites are already using performance measures. Most sites indicated the analysis of the data collected from
the study resonated with their own measurement tracking and evaluation outcomes.
“What I’ve seen so far is consistent with our internal results, in terms of reduction in ED visits for people
in the program,” reported one site manager.
“When I saw the initial results from the non-survey data collection, I was pleasantly surprised to see that
it reflected similar outcome results as those we tallied through our local data analysis”, said another
site manager.
One site also noted that having more data, resonating with local findings, is definitely a benefit.
“There is always a benefit of having more data to look for patterns, understand and adapt best practices
and convince funders and other stakeholders of the worth of a particular effort.”
Some study sites were pleasantly surprised at the volume of Patient/Client Survey responses and “how receptive folks were to the survey.”
Theme 4: The Study Provided Numerous Other Benefits
One site indicated that being involved in the study helped them expand the number of pathways they provide
and the geographic areas they served.
“Being involved in the study helped us determine to expand the Pathways project. It helped us move
our actual Pathway development forward more quickly than we might have and spread it to different
communities,” the site official stated.
Another site used the impetus of the study to complete plans for revising how they collect data.
The biggest benefit from the program was “recognizing the need to improve our tracking and reporting,”
stated the site manager. The site subsequently created a new database to replace their spreadsheet
system that was becoming inadequate.
Another site recognized the benefit of having a third party review their processes and documentation and discuss the data entries and patient communication procedures with staff. The site manager indicated this helped
their program identify “where we need to tighten up, within or between agencies, in relation to our training and
our workflows.”
The collegiality, problem-solving and information sharing aspects of the study were positively acknowledged
by one site manager, in particular.
Being involved in the teleconferences and on-site meetings were helpful, as well – having a chance to
meet other sites facing the same issues, indicated a site manager. It was helpful to hear how different sites
are “selling” care coordination. For example, one of the sites associated health care coverage with specific
services that may not otherwise been paid to create a monetary value their collaborative was able to bring.
29
Study Sites’ Future Interest and Recommendations for Next Steps
All study sites are interested in pursuing additional efforts for standardizing care coordination performance
measures. This includes continuing with an ongoing collaboration with the Rockville Institute’s Center for
Pathways Community Care Coordination.
The study sites viewed the participatory nature of project as viable and productive relative to accomplishing
the project’s objectives. Their responses acknowledged a varying degree of gains in organizational capacity
resulting from participating in the study and the information exchanges between the CBPR team (including
participating partners, Westat corporate team members and the TEP).
One of the most prevalent challenges cited was a lack of sufficient time to do more of the actual data
collection subsequent to performance measure development/selection. However, most attendees deemed the
performance measure development process to be noteworthy as clearly evidenced by its rigor and conformity
to contractual expectations.
Many site managers reported that they thought having a longer data collection period could be helpful. Another
common remark was that including ways to measure “return on investment” (ROI) should be looked at. These
sentiments are reflected in the statements below.
“Having more data to look at and use to convince funders this is worthwhile would be helpful. Developing
ways to state that this implementation would help – for example if a site is doing particularly well or if
an approach is working (well) in multiple areas, that certainly builds for credibility. Having cost-benefit
data would have been helpful,” said one site manager.
“For us, having cost benefit data would be helpful to justify value of care coordination, where [at this]
time we’re trying to do more with less. Hard data, ROI or think about different ways we can sell care
coordination to our funders or stakeholders is always helpful. Having a longer data collection period
would be helpful,” the site manager suggested.
Opening up the study to a broader range of participants would be useful, according to one site manager. Extending
the study period or expanding the study measure definitions would be helpful, as well, noted several site managers.
Continuing to refine the measures or expanding the measures would provide additional helpful information for
community-based programs, as noted by several site managers. In order to obtain greater amounts of data per
measure, clustering measures in relation to the types of services or types of sites conducting the work were
recommendations by some.
IMPLICATIONS AND CONCLUSIONS
The Implications and Conclusions section reflects study accomplishments and summarizes implications
for community care coordination providers and stakeholders as well as the research community. It
describes how the study process and results contribute to the field of standardizing performance
measures for community care coordination – particularly for underserved populations. This section also
describes efforts “moving forward” – what study sites are doing or planning in relation to enhancing their
own impact in this field and a discussion about dissemination of this report.
Study Accomplishments
The NIH-CCCPM project was a pilot study to develop and test new performance measures in community care
coordination. The project was supportive of current health reform efforts and federal initiatives to reduce health
disparities by improving health outcomes for at-risk populations.
The study involved a small number of diverse community-based sites. Among the elements of diversity were their
size, location, setting, and pathways used. Common threads were their focus on community care coordination and
use of or adaptation of the Pathways HUB Model. While more work is needed in this area, the results of this project
have demonstrated the feasibility of performing data collection activities across diverse sites.
The project has addressed the lack of performance measures in community care coordination. The study’s use
of CBPR and other scientific-based approaches to mesure development is a major contribution to the field of
care coordination. Further, through this effort, we have assessed, to some extent, the usefulness of the
measures in helping to informlocal quality improvement activities.
The project has implications that go far beyond the five partner sites because of the network outreach and
expansion capabilities. Spanning out in concentric circles, the NIH-CCCPM project can have a major impact in
terms of presence and visibility of the initiative.
Key points that we focused on in the study and in this report include:

Performance measurement is an essential ingredient for improving quality and reducing disparities.

Communities working in collaboration with research institutions can help translate science around
care coordination processes into real world practice.

Use of performance measures can help identify key information that may be useful in creating
alternative payment options for care coordination services.
Key Lessons Learned/Take Home Messages
Implications for Importance to Community Care Coordination Organizations
32

Although community-based care coordination organizations are diverse with respect to populations
served, service delivery and care coordination models, organizational structures, and leadership styles,
a common value that is shared by these organizations is the commitment to quality improvement and
providing clients with high quality services.

The implementation of a performance measurement system is feasible in community care coordination
organizations with minimal disruption in their daily work efforts.

Community care coordination organizations already document, track, collect and analyze data for a
number of purposes and these ongoing efforts are the stepping stones for building a standardized
performance measurement system.

The success of the NIH-CCCPM project demonstrates that community care coordination organizations
can contribute to a project of national significance where uniform data collection and participation in the
development of standardized performance measures were required.
As a result of these accomplishments, community care coordination organizations have expanded their portfolios
to include being research collaborators and innovators in service delivery. This experience adds to their collective
credibility and perhaps expands opportunities for future funding sources, future collaborations such as participation
in the CCCLN and long-term sustainability.
Implications for Research Community
The NIH-CCCPM project and its reported results, analysis and discussion in this report can benefit the research
community in many ways.

The project contributed to the science of performance measurement by developing standardized metrics
in community care coordination.

Using innovative CBPR principles and strategies, the researchers and community-based providers
engaged in collaborative processes designed to define core elements of care coordination for systematic
measurement. For example, we used a consensus process to identify essential domains (dimensions of
performance) of the community care coordination.

Through pilot testing the metrics across multiple sites, we assessed feasibility and provided a basis for
benchmarking performance both within individual care coordination programs and across care coordination
programs in multiple communities.

The project team produced documentation tools that could help track outcomes-based care coordination
services and performance-based financing of care coordination.
Moving Forward
We hope this preliminary research study will facilitate adoption and implementation of performance measure
development for community care coordination networks. Moreover, we envision that it will lead to further research
and learning that will inform practice and build capacities in local communities.
Specifically, implementation of a demonstration study with a longer study timeline would enable further testing of
the measures to assess:

The reliability and validity of the measures;

The utility of the measures in improving service quality; and

The utility of the measures in assessing patient experience.
The strengthening of care at the community level is an important element of the NIH-CCCPM effort. Community
care networks have an important contribution to make to the healthcare reform and quality improvement efforts –
and do so with measurable outcomes in ways that are cost effective.
Study Sites Additional Efforts – Expanding Capacity
Study sites are engaged in many efforts, several of which are in alignment with the NIH-CCCPM Project. They
are expanding community care coordination services, broadening their geographic focus, analyzing participant
needs differently, improving the way they track and evaluate data, continuing and expanding alliances and adding
collaborative information technology tools. The summaries below represent only a few of the more recent activities
of the study sites.
33
Community Health Access Project. CHAP is currently involved in helping the state of Ohio replicate the Pathways
Community HUB Model for Medicaid beneficiaries in Appalachia. Ohio officials said the model was selected
because it demonstrates improved outcomes and reduced costs.
“This initiative fits perfectly with the governor’s objectives to improve care coordination for vulnerable Ohioans,
said Director Greg Moody of the Governor’s Office of Health Transformation. “This initiative fits perfectly with the
governor’s objectives to improve care coordination for vulnerable Ohioans and to pay for value, not volume, in
healthcare.”
Michigan Pathways to Better Health is another new venture that expands the reach of the CHAP Model. The Michigan
Public Health Institute, partnering with the Michigan Department of Community Health and the Community
Health Access Project received a grant award of $14,145,784 to enable the integration of community health
workers (CHWs) into primary care teams in three Michigan counties. This “Pathways Community HUB” model will
decrease hospitalizations and emergency department visits by improving adherence to therapy, improving access to primary care and increasing use of preventive care and support services. Over a 3-year period, the
Michigan Public Health Institute will train over 231 people and hire 87 people to serve as community health workers, providing care self-management coaching, care navigation services, and care coordination services.
Rural And Urban Access To Health. During the course of the study, RUAH grew from one healthcare
pathway (medication assistance) to providing five additional pathways. Additionally, RUAH created new reports to
reflect the change from an activity-based model to an outcome-based model. Another effort is the development
of human-interest stories and data to demonstrate RUAH services cost benefit for both reduced expenses, and
improved health status.
Baylor Community Care. The Program Manager indicated that BCC is looking to expand the use of Community
Health Workers in community care coordination roles. “This includes whether that’s facilitating transitional care
like they do in the program we focused on in this study, or whether that’s expanding their use in chronic disease
education and self-management training like we do in another of our programs.”
Lincoln E. D. Connections. Lincoln E. D. Connections is implementing Cluster Based Planning – a national
behavioral health/substance abuse model that includes tracking resources according to diagnosis. According to
the Program Manager, LEDC has incorporated this model, including its “wrap around” (behavioral/physical) feature
into their pathway(s).
Access El Dorado. In September 2011, ACCEL was selected to become one of 15 best-practice examples in the
use and integration of technology to improve health and healthcare for its residents. The collaborative received a
$350,000 Model eHealth grant award from the University of California, Davis and the California Telehealth Network
(CTN). The funds will be used to acquire eHealth technologies and telehealth equipment, provide training and
manage the connection with the broadband system that CTN is now establishing around the state.
Dissemination
This Technical Report serves as a key component of the NIH-CCCPM research project’s overall dissemination
plan. Dissemination is the process of communicating research findings to stakeholders so that the evidence can
be used for change. Dissemination is also an important step for increasing the knowledge base in both research
and practice communities. An overarching goal of the NIH-CCCPM dissemination planning was to ensure that the
development, preservation, management, and documentation of project purpose, methodology, and outcomes
were maintained and shared with the community. The NIH-CCCPM project’s contributions to the research literature and to the development of innovative data collection tools, and other products form a framework to support
ongoing learning and capacity-building in community care coordination.
34
As a result of the CBPR framework for this project, the dissemination planning process was designed to be
collaborative and to help impact and influence service planning for potential users and current beneficiaries of
medical and social services, as well as increase opportunities for partnership development among community care
coordination organizations. In this vein, the NIH-CCCPM technical report will be distributed to key stakeholders including an expanded network of local and national community care coordination providers, health care providers,
consumers, policymakers, professional associations, and researchers. Stakeholders will have the opportunity to
review the study findings and perhaps adopt some of key performance measures to their organizations or inform
other organizations about these efforts.
The dissemination plan is vastly important. The framework emanating from the CCCPM dissemination plan can be
utilized as a roadmap for other research initiatives and by stakeholders involved in planning culturally competent
strategies for healthcare delivery and partnership development. Hopefully, the professional community, who will
take a lead in performance measure development/implementation, and the governing and funding bodies, who
support them, and, critically, the potential users and beneficiaries of services will benefit from the work that we
do.
In Conclusion
In a climate of increasing scrutiny, systemic reforms and fiscal constraints, the public and private health sector
is being required to provide evidence for the effectiveness of its interventions and the achievement of enhanced
quality of life outcomes for the community. An inherent challenge is to obtain and present this evidence while
acknowledging the substantial role played by the social and environmental determinants of health. The NIHCCCPM project supports current health reform efforts to reduce health disparities by improving health outcomes
for at-risk populations. In this regard, the grant award provided an opportunity to build upon the Westat research
collaborative team’s prior work with the CCCLN.
In light of the short time frame allocated for the study, the NIH-CCCPM project was charged with the daunting task
of creating new, and newly validated, measures for assessing the impact of community-based care coordination
on health and well-being—in addition to beginning to build an evidence base. Our study underscored the premise
that to achieve an authentic participatory research approach, and viable quality data, project stakeholders need
to be ‘partners’ in the process of developing performance indicators. This configuration must be undergirded by
sound research methodology, study protocols, and appropriate data collection systems.
This project established a foundation for broader investigative study on the utility of the performance measures
to assess progress made in quality improvement and disparities reduction efforts. Furthermore, the results of this
project addressed the dearth of performance measures available for use by community-based care coordination programs. These measures will continue to be essential in quality improvement efforts for community care
coordination. The unique application of CBPR methods to the development of performance measures will increase
the likelihood of the adoption of community care coordination performance measures in the field. By engaging
community-based care coordination organizations in this project and study existing care coordination resources
(such as the Pathways Community HUB Mode, the scientific community will have a better understanding of what
works with those who need help the most. Given a dearth of literature in this regard, more scientific and evidencedbased data is needed to support such claims. It is important to conduct in-depth research on what makes the best
systems successful and disseminate what is learned. Since socioeconomic, geographical, and related societal
determinates have a bearing on the efficacy of community care networks, it is envisioned that initiatives such as
the NIH-CCCPM project can be transformative in bringing about needed reforms in the healthcare industry.
35
APPENDIX
This is a summary of some of characteristics of the NIH-CCCPM study project sites. Descriptions are primarily
limited to those services provided as part of their involvement in community care coordination. Each of the sites
also provides many other services and carries out many other activities.
The Community Health Access Project (CHAP) is a nonprofit organization that was started in Mansfield, Ohio in
1999 by Mark Redding, MD, and Sarah Redding, MD. CHAP’s mission is “To eliminate health and social disparities
in our community by finding those at risk, connecting them to care and measuring the outcomes. We believe all
communities can be transformed through the work of community health workers and the creation of community
HUBs – an accountable care coordination delivery system.”
Numbers Served. CHAP serves approximately 1,200 individuals, annually – 600 each in Richland and Knox Counties.
Clients include pregnant and postpartum women and children from age 0 to 3, with an emphasis on Medicaid
eligible populations.
Outcome Measures. Key outcome measures include the program’s impact on birth weights, prenatal visits and
miscarriages. Data from more than 300 clients shows a 30 percent reduction in the risk for low-weight births in
Richland County and the number of at-risk pregnant women served increased from 19 to 146 in 1 year, a level that
has been maintained over 3 years.
Budget, Staff and Funding. Currently, the budget for Richland and Knox County combined, is approximately
$800,000. This supports the following staff – Executive Director, COO/Fiscal Director and six full-time equivalent
Community Health Workers. Volunteer personnel, including Mark Redding, MD, serve advisory and support
capacities. About 40-45 percent of the program comes from payments for meeting benchmark interventions and
outcomes. Funding comes from Medicaid managed care and state-funded maternal and child health programs,
state grants, United Way, and foundations.
Community and Patient Dynamics. Because the NIH-CCCPM project focused on Richland County, community
characteristics are reported for that jurisdiction. The County is rural in nature, with a predominantly White population
(87.9%). The highest percentage of racial minorities are Blacks (9.4%) followed by Asians (.7%). Only 1.5 percent
of the population is of Hispanic/Latino origin.
Richland County has more children without insurance than any metropolitan county in Ohio. In addition to health-related
needs, according to the CHAP CEO, Sarah Redding, MD., transportation, housing, jobs, and a “steady food supply”
are problems for residents of the County and the situation seems to have worsened over the last several years.
FOR MORE INFORMATION
Community Health Access Project, 35 North Park Street, Suite 132 Mansfield, Ohio 44902
http://www.chap-ohio.net
Mark Redding, MD, FAAP,
Co-Founder, CHAP
(419) 525-2555
38
Sarah Redding , MD, MPH,
Director, CHAP
(419) 525-2555
APPENDIX
Established in 2000, Rural and Urban Access to Health (RUAH), is a collaborative program sponsored by St.
Vincent Health, which is Indiana’s largest healthcare employer. RUAH provides safety net services in eight counties
in central Indiana.
The Purpose of RUAH is to connect friends, family and neighbors to a comprehensive, integrated delivery network of
health, human, and social services resulting in improved access and removal of barriers to needed resources. Main
goals of the program include increased access to medical and social services and reduced inappropriate care. The
program employs field-based workers to coordinate and integrate care, provide outreach and education, and
facilitate access to healthcare and prescription drugs for the growing at-risk population.
Numbers Served. In Madison County, where the NIH-CCCPM study took place, approximately 1,400 persons are
served annually.
Outcome Measures. Key outcome measures include the program’s impact on chronic disease management and
ED utilization. In fiscal year 2010, RUAH assisted 5,695 clients with 9,412 referrals to local health, human, and
social service agencies. RUAH medication coordinators assisted community members in accessing 10,867 low/
no cost medications valued at $5,524,459.
Budget, Staff and Funding. The cost of running the eight-county program is estimated at $1.2 million annually,
as of November 2011. Costs include salaries and a monthly fee for the prescription assistance software. Staffing
includes a director; a coordinator for all access workers; an operations manager, language access workers (who
organize all of the training, assessment, and process improvement initiatives); 15 health access workers; and a
large number of volunteers. Funding is primarily achieved through the parent organization, St. Vincent Health,
through its local healthcare ministries. Each participating hospital is responsible for paying access workers.
Community and Patient Dynamics. While RUAH operates in eight counties, for purposes of this report, community characteristics are derived from Madison County, as this was the jurisdiction used for the NIH-CCCPM study.
The County has a predominantly White population (89.1%) with 8.4 percent of the community being Black, and
.4 percent being either Asian or Alaska Native/American Indian. Hispanic/Latinos of any race represent just 3.4
percent of the population.
The majority of RUAH participants are uninsured, underinsured and/or low income (under 200% FPL). There is
an overrepresentation of Hispanic/Latino participants compared to the community. The patient population also
includes migrants, persons with limited or no English proficiency, and transients. RUAH System Director, Sherry
Gray, indicates that several medical, social, and financial problems are faced by community members. These
include the inability to get a doctor or medication, no insurance, lack of access or connection to social services, insufficient funds for visits or co-payments, transportation, and (outside of the ED) access to medical care,
particularly specialty care.
Rural and Urban Access to Health (RUAH) | St. Vincent Health, 10330 N. Meridian St.,
Suite 415 Indianapolis, IN 46290
http://www.stvincent.org/Community-Connections/Programs/Advocacy-Support-Programs/
Rural-and-Urban-Access-to-Health.aspx
Sherry E. Gray, MA,
System Director
(317) 583-3211
Susie Dittman, MHA,
Operations Facilitator
(317) 583-3213
APPENDIX
39
The Baylor Health Care System served more than 2.8 million people in 2011; Baylor Community Care (BCC) is a
project of that system. BCC served as a study site in the Dallas-Fort Worth “metroplex” area of Texas. BCC seeks
to provide quality health care and a compassionate medical home to patients and families that do not have access
to a primary care physician. A primary goal is that underserved patients will experience less health disparities and
require less frequent utilization of hospital services.
Community Health Workers (CHWs) are deployed within four of Baylor’s hospitals to identify uninsured patients
who require ongoing care following discharge. They provide health education, health system navigation and
patient advocacy, including connections to medical home clinics in the BCC network.
Numbers Served. In 2011-2012, the community care navigation program worked with 1,200 patients, and
successfully connected 806 patients to a medical home. The BCC clinics that become medical homes for these
patients served 12,000 patients.
Outcome Measures. Director Adam Chabira indicates, “We connect at a little over 50 percent of patients to medical
homes within 14 days of discharge.” Once patients started using the medical clinics, 17 percent had fewer and
shorter hospital stays.
Budget, Staff and Funding. The budget for the program (FY 2012-2013) is approximately $6.5 million, with $5.7
million coming from the Baylor Health Care System and the remainder coming from grants and in-kind services
(such as the overhead at the clinics). The budget including expenses for the 10 community clinics and community
care navigation staff at four of the Baylor hospitals. Staffing includes 14 full-time equivalent physicians and nurse
practitioners and 10 to 12 community health workers, four of which are community navigators. The program also
uses volunteers in various capacities.
Community and Patient Dynamics. BCC serves the 12 county Dallas-Fort Worth Arlington Metropolitan Statistical
Area (MSA). The 2010 Census indicates that 65.3 percent of the population was White, 15.1 percent were AfricanAmerican, 5.4 percent were Asian, 0.7 percent was American Indian or Alaska Native, and .1 percent was Native
Hawaiian or Other Pacific Islander. Hispanic or Latino origin was a characteristic of 27.5 percent of the population.
In this MSA, 14 percent of residents lacked insurance according to 2006-2010 American Fact Finder data.
Most BCC participants are low-income and are uninsured. Transportation, money for co-payments or prescriptions,
and access to specialty care are significant problems for BCC clients, according to Director Chabira.
Baylor Community Care Baylor | Health Care System
8080 North Central Expressway, Suite 1700, LB83 Dallas, TX 75206
Adam Chabira, MHA,
Director, BCC
(972) 860-8681
40
James Walton, DO, MBA,
VP of Network Performance
for Accountable Care Baylor
Health Care System
(214) 265-3726
APPENDIX
Lincoln E.D. Connections
Lincoln E. D. Connections (LEDC) is a collaborative program of Lincoln Nebraska’s Bryan Medical Center
and Saint Elizabeth Regional Medical Center. Initiated in 2005, the purpose of ED Connections is to serve the
community’s most vulnerable patients who repeatedly use the emergency department (ED) for nonemergency
purposes. The primary goal of the program is to eliminate barriers to health care, such as transportation, medication costs,
financial difficulties, Limited English Proficiency, and difficulties navigating health systems.
ED Connections case managers work with clients in developing a personal care plan designed to meet the most
immediate needs of the client first. Services are provided typically over a 3- to 12-month period, during which
participants might follow one or more different pathways.
Numbers Served. Annually, approximately 4,500 individuals qualify for enrollment and approximately 500 to 600
are served.
Outcome Measures. LEDC participants demonstrate less nonemergent ED use, attain enrollment in medical
homes, attain prescription medication assistance, and report improved self-care and health functioning. For clients
in FY2011, the project reports: 100 percent were enrolled in medical homes, 81 percent kept their first appointment
with the physician, 85 percent received prescription assistance (over a 3-year period, saving patients more than
$34,000 in drug costs), and 67 percent reported improved self-care and overall health.
Budget, Staff and Funding. Annual program costs are approximately $265,000, primarily covering the salaries and
benefits of case managers. Each hospital employs one social worker and one registered nurse as case managers.
Each case manager handles roughly 30 clients at a time. Operational overhead is covered by the two hospital
systems. About $15,000 annually is needed to provide minimum barrier relief including medication assistance,
help with co-pays, housing assistance, utility bills, and transportation to medical appointments and other
emergency needs. These funds have come from private donations or grants secured by the hospital foundations.
Community and Patient Dynamics. For the LEDC program that was part of the NIH-CCCPM study, the patients
are primarily from the City of Lincoln, Nebraska, the state capitol. According to 2010 census data, the racial
makeup of the city was 86.0 percent White, 3.8 percent African American, .8 percent Native American, 3.8 percent
Asian, 0.1 percent Islander, and 3.0 percent from two or more races. Hispanic or Latino of any race was 6.3 percent
of the population.
Approximately 80 percent of LEDC clients have behavioral health or substance abuse issues. In addition, 70
percent of those served are uninsured or underinsured and one-fourth is homeless. Currently, the majority of
clients are predominantly White women age 25 – 45. Health-related needs and gaps include access to medical
care, insurance co-pays, prescription medication assistance and access to specialty care, including mental health
treatment. Other barriers to care, according to the LEDC Program Director, Tom Hoover, are lack of transportation,
housing, sufficient food supplies, and childcare.
Bryan Medical Center & Saint Elizabeth Regional Medical Center Emergency Departments
2300 South 16th St., Lincoln, NE 68502
www.bryanlgh.com and www.saintelizabethonline.com
Tom Hoover, RN MBA-HCM
LEDC Program Manager
(402) 481-4165
(402) 219-5205
Lincoln E. D.
Connections
Jean Stilwell, M.A.,
Resource Development
Coordinator
(402) 219-7051
APPENDIX
41
Access El Dorado
Access El Dorado, popularly known as ACCEL, is a community-wide collaborative among public and private
agencies in El Dorado County California. Formed in 2004, ACCEL’s mission is to (1) seek to create healthier
communities, especially within vulnerable populations, (2) identify specific barriers (especially access!) to a healthy
community and (3) develop systematic improvements that include all partners and serve their entire community.
Among its initiatives are seven cross-agency care pathways using community health workers to help low-income
individuals and families obtain health insurance, navigate the health care system, access appropriate medical and
mental health services, and learn related self-care behaviors.
Numbers Served. In 2011, over 1,200 patients were served across seven pathways.
Outcome Measures. Key outcome measures include the program’s impact on newborn and
well-child visits to primary care physicians, immunizations, mental health pediatric consultations and access to
specialty consultations, as well as obtaining and retaining health insurance. Since the program’s inception, more
than 6,600 previously uninsured children have obtained coverage. More than 3,300 children have been helped with
connections to healthcare resources. Establishment of a medical home, achieved by 86 percent of the children
referred for that need, resulted in a 43 percent reduction in subsequent Emergency Department costs.
Budget, Staff and Funding. The minimum annual budget is approximately $250,000. This covers a full-time program director, hourly stipends for two physician champions, a part-time supervising health education coordinator,
and two bilingual community workers. It also covers licensing and maintenance costs (but not upgrades/changes)
for ACCEL’s web-based care coordination system. ACCEL funding has come from multiple sources including ACCEL partner contributions, First Five, foundations, and grants.
Community and Patient Dynamics. El Dorado County, California is located in the east-central region of the state.
A primarily rural county, two major community areas, the Western Slope and South Lake Tahoe are bisected by
the Sierra Nevada mountain range. Race and ethnic data for the county (2011) reflect 90.4 percent White, 3.7 percent Asian, 1.4 percent American Indian and Alaska Native, .9 percent African-American, and 3.3 percent of the
population reporting two or more races. Persons of Hispanic or Latino origin are characteristic of 12.3 percent of
the population.
Similar to other rural areas, El Dorado County residents often suffer disproportionately from chronic illness and
overall poor health. Other problems El Dorado County residents face is having no insurance or being underinsured,
having no primary care physician, and limited access to necessary dental, behavioral health, mental health, and
specialty services. Additional barriers to care for ACCEL patients include transportation, food security, homelessness, and communication gaps (i.e., Internet access, cell phone minutes). Access to culturally competent
resources is also a problem.
County of El Dorado, Department of Health Services – Public Health Division
670 Placerville Drive; Suite 1B Placerville, CA 95667
http://www.acceledc.org
Christine Sison, MS.,
Program Manager
Access El Dorado (ACCEL)
accelqa@gmail.com
42
Greg Bergner, MD,
ACCEL Physician Champion
bergner@sbcglobal.net
ENDNOTE CITATIONS
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This study used the classification of “domains” as depicted in the
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26
Series of telephone interviews, calls, and electronic
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27
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43

Community Care Coordination Performance

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