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Approaches to Addressing Nonmedical Services and Care Coordination Needs for Older Adults

Authors:

Abstract

Objective: Non-medical services care coordination for daily activities of living is crucial in improving older adults' health and enabling them to age in place, but little is known about specific practices and barriers in this space. Methods: Semi-structured interviews were conducted with 41 professionals serving older adults in greater Chicago, Illinois-which consists of diverse urban, suburban, and semi-rural communities-to contextualize non-medical services needs and care coordination processes. Results: In-home care, home-delivered meals, non-emergency transportation, and housing support were cited as the most commonly needed services, all requiring complex coordination support. Respondents noted a reliance on inefficient phone/fax usage for referral-making and cited major challenges in inter-professional communication, service funding/reimbursement, and HIPAA. Conclusions: Non-medical services delivery for older adults is severely impacted by general siloing throughout the care continuum. Interventions are needed to enhance communication pathways and improve the salience and interdisciplinarity of non-medical services coordination for this population.
Empirical Article
Approaches to Addressing Nonmedical
Services and Care Coordination Needs
for Older Adults
Jerel M. Ezell
1,2
, Samiha Hamdi
3
and Natasha Borrero
4
Abstract
Objective: Non-medical services care coordination for daily activities of living is crucial in improving older adults’ health and
enabling them to age in place, but little is known about specific practices and barriers in this space. Methods: Semi-structured
interviews were conducted with 41 professionals serving older adults in greater Chicago, Illinois—which consists of diverse
urban, suburban, and semi-rural communities—to contextualize non-medical services needs and care coordination processes.
Results: In-home care, home-delivered meals, non-emergency transportation, and housing support were cited as the most
commonly needed services, all requiring complex coordination support. Respondents noted a reliance on inefficient phone/fax
usage for referral-making and cited major challenges in inter-professional communication, service funding/reimbursement, and
HIPAA. Conclusions: Non-medical services delivery for older adults is severely impacted by general siloing throughout the care
continuum. Interventions are needed to enhance communication pathways and improve the salience and interdisciplinarity of
non-medical services coordination for this population.
Keywords
care coordination, long-term services and supports, non-medical services, older adult
Introduction
Presently, older adults comprise roughly 16%of the United
States (U.S.) population, and this proportion is expected to
grow substantially in the coming decades, with the number of
individuals aged 85 years and older expected to triple in size by
2040 (A Profile of Older Americans: 2019, 2020). These demo-
graphic shifts call to attention the need to develop a better
understanding of the multifaceted challenges that may surface
in addressing the health and wellbeing of this socio-medically
vulnerable group (Rowe et al., 2016). These dynamics are of
particular import given the fragmented nature of healthcare in
the U.S., where a lack of uniformity characterizes most care
coordination and delivery systems in the country, contributing
to poor population health outcomes and waste (McWilliams,
2016; Shrank et al., 2019). Moreover, these demographic
dimensions are important in consideration of the generally
diminished social supports of older adults, supports which are
being further strained by the COVID-19 pandemic and heigh-
tening already-outsized levels of immobility and social isola-
tion in this population (Sands et al., 2020; Shahid et al., 2020).
Home-based primary care (HBPC), often colloquially
referred to as “house calls,” brings routine, comprehensive
medical and ancillary care into a patient’s home (Leff et al.,
2015). HBPC has been proposed as a potential model for cost-
efficient, patient-centered care that can help keep older adults
and individuals with complex medical conditions, such as
those with serious mental disorders and cognitive difficulties
(Melnick et al., 2016), in the community by reducing hospita-
lizations and improving functioning, hence facilitating well-
ness and/or successful aging and contributing to an improved
quality of life (Stall et al., 2014).
Importantly, research has also consistently demonstrated the
importance of non-medical aspects of the care continuum (i.e.,
“social,” community-based, and long-term services and sup-
ports, etc.), including in-home care, non-emergency transpor-
tation, housing, and meal delivery, in allowing older adults to
age in place (DeJonge et al., 2009; Meiners et al., 2014). Effec-
tive care coordination and general continuity of care have been
described as necessary synergistic lynchpins in addressing the
wider constellation of social determinants of health among
older adults, which includes equitable and consistent access
to resources such as nutritious food and safe housing (Johans-
son & Harkey, 2014; Wallace, 2014).
1
Africana Studies and Research Center, Cornell University, Ithaca, NY, USA
2
Cornell Center for Health Equity, Cornell University, Ithaca, NY, USA
3
Department of Global Development, Cornell University, Ithaca, NY, USA
4
Department of Family and Social Medicine, Montefiore Medical System,
Bronx, NY, USA
Corresponding Author:
Jerel M. Ezell, Africana Studies and Research Center, Cornell Center for Health
Equity, Cornell University, 310 Triphammer Rd., Ithaca, NY 14850, USA.
Email: jme246@cornell.edu
Research on Aging
1–11
ªThe Author(s) 2021
Article reuse guidelines:
sagepub.com/journals-permissions
DOI: 10.1177/01640275211033929
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Despite evidence indicating better outcomes when meeting
the social and non-medical needs of older adults (Altfeld et al.,
2013; B. S. Black et al., 2019; Liu et al., 2016), little is known
about specific referral and coordination practices and attendant
challenges and opportunities related to integrated care that may
exist in this space. A deeper contextualization of these
dynamics may aid in the development of social and medical
policy to improve the health outcomes and overall quality of
life of older adults. To this end, we conducted semi-structured
interviews with professional stakeholders in greater Chicago,
Illinois involved in the care of older adults to (1) identify and
characterize social and non-medical services needs and coordi-
nation activities within home-based care models and (2) con-
textualize barriers and prospective facilitators to implementing
care coordination modalities.
Methods
Between July 2016 and November 2016, we conducted semi-
structured interviews with professional stakeholders in greater
Chicago, Illinois (“Chicagoland”), which includes the city of
Chicago as well as several suburban counties and low-density
semi-rural communities, comprising roughly 9.5 million peo-
ple (U.S. Census Bureau, 2019). Professional stakeholders
interviewed included individuals from the following entities :
1) Home-based primary care (HBPC); 2) Community-based
organizations (CBOs); 3) Managed care organizations
(MCOs); and 4) Senior Services Agencies (SSAs), such as Area
Agencies on Aging, Care Coordination Units (CCUs), and inte-
grated care programs. Interviewees were recruited using pur-
posive and snowball sampling techniques, which included
usage of online directories and networking. A total of 41 pro-
fessional stakeholders (9 CBO, 13 HBPC, 13 SSA, and 6 MC)
were recruited and participated, including individuals who
were front-line staff (e.g., care coordinators, social workers,
office managers), clinicians (e.g., house call physicians, nurse
practitioners, etc.), and organizational leaders (i.e., individuals
in executive or directorship roles), representing 23 organiza-
tions (7 CBOs, 7 HBPCs, 5 SSAs, and 4 MCs; Table 1).
Respondents received a $50 gift card for participation. The
study was approved by the appropriate institutional review
boards.
Interviews were conducted by a research team member
trained in qualitative interviewing, with each interview lasting
approximately 50 min. Most interviews were conducted in-
person (n¼34), with the remaining interviews conducted via
phone (n¼7). Although interview questions were similar,
separate interview guides were developed for each stakeholder
group to capture potential differences in job functions and
nomenclature. Questions were open-ended and follow-up
probes were asked to help gather clarity on statements and/or
obtain greater detail. Example interview questions are provided
in Appendix 1.
All interviews were audio-recorded and transcribed verba-
tim by an external company. Interview data were analyzed in
ATLAS.ti 9.0. The qualitative research procedures followed
grounded theory and constant comparative methods (Charmaz,
2006; Glaser, 1965), the latter being employed to assess poten-
tial contextual differences in framings presented within and
between the four stakeholder group types. After each interview,
the interviewer developed a memo detailing observations using
narratives containing “thick description” (Geertz, 1973), where
provisional themes were considered and then mapped and the
disposition of the respondent (e.g., tonality, body language,
etc.) was characterized. Interview memos were reviewed by a
separate member of the project team. Aggregated memo and
interview data were further discussed in meetings that included
members of the entire project team (Cresswell, & Miller,
2000).
Two project team members developed a set of codes based
on a review of the observational memos and interview guides.
Preliminary codes were then applied to a subsample of eight
transcripts (two per each of the four stakeholder groups), which
led to the development of a refined codebook. Disagreements
in coding were resolved through discussion with a third project
team member. Next, a team member read each transcript and
highlighted relevant sections of text using the refined codes to
help locate potential thematic patterns (Glaser, 1965). Descrip-
tive reports containing recurrent concepts and constructs were
produced and discussed among team members and then used to
develop an interpretive framework for the final analysis. For
additional fidelity, following this interpretive process,
member-checking was performed with several project-
relevant stakeholders to help better contextualize the outlined
themes and facilitate the process of extrapolation (Carlson,
2010).
Results
Three major thematic areas emerged from the analysis: 1) Iden-
tifying and calibrating non-medical services needs and care
coordination modalities, where respondents described the pro-
cesses involved in determining needs, identifying providers,
and subsequently making largely informal, unsystematic
Table 1. Overview of Organizations and Practices Included in Interviews.
Community-Based Organizations Home-Based Primary Care Senior Services Agencies Managed Care Total
Total Organizations 7 7 5 4 23
Total Management Staff 8 5 6 5 24
Total Line Staff 5 8 3 1 17
Total Respondents 9 13 13 6 41
2Research on Aging XX(X)
referrals; 2) Managing challenges and barriers to non-medical
services coordination, where respondents outlined their navi-
gations through interorganizational communication fissures
and endemic issues like finding reliable, quality non-
emergency transportation and housing; and 3) Considering
the scope of macro-level influences and issues, where respon-
dents discussed systems-levels issues related to government
policy and funding and highlighted potential solutions to
observed obstacles, including community-based integrated
care and wellbeing models and case conferencing. Within these
themes, sub-themes were identified and differences between
the stakeholder groups are discussed (Table 2). Additionally,
respondents’ proposed solutions and recommendations for
addressing barriers, when raised, are presented within the
appropriate subsection.
Identifying and Calibrating Non-medical Services Needs
and Care Coordination Modalities
Understanding common non-medical service needs of older adults.
Aligning with the care coordinators and intake specialists from
the CBOs, respondents from each stakeholder group routinely
cited in-home care (e.g., home up-keep, laundering, etc.), non-
emergency transportation, meal delivery, and housing as the
most common and pressing non-medical service needs—and
the most commonly requested services—for older adults.
When HBPC and SSA respondents were asked to rate how
knowledgeable their fellow staff members were in recognizing
and understanding the various non-medical needs of home-
bound older adults, all who were queried rated their staff mem-
bers medium to high (in knowledge level). Respondents across
each interview group expressed solid rapport and conceptual
alignment within their respective organizations/practices.
However, HBPC respondents less frequently indicated this and,
of those queried, less frequently regarded their staff members
as knowledgeable when it came to knowing which specific
coordination/referral actions to take or how to successfully
activate locally available non-medical services. Additionally,
referral follow-up and communication were cited as a chal-
lenge for providing relevant non-medical services.
Interorganizational and referral communication challenges. Respon-
dents indicated that referrals for non-medical services received
or sent were facilitated through phone calls, faxes, and, to a
lesser extent, e-mail (or combinations thereof). Referral-
making or status follow-up/case tracking for non-medical ser-
vices referrals (e.g., determining whether a particular service
had been initiated, completed, required a specific follow-up
action, etc.) via electronic/digital means was not reported by
any respondents. Along these lines, respondents from each
stakeholder group expressed strong support for shifting toward
the usage of integrated digital platforms similar to that under-
lying an electronic health record (EHR), with a emphasis on the
need for “bi-directional” functionality (i.e., the ability to both
send and receive custom referrals). A Business Administrator
with a local AAA emphasized that “In an ideal world, we’d all
have EHRs, and no matter what platform you’re on, you can
talk to somebody else’s [EHR] and document it. [ ...] Like, I
would love for the PCP (primary care physician) to know that
their client is getting home-delivered meals.”
Vetting and selecting non-medical service providers. Key criteria in
selecting non-medical service providers primarily related to the
quality of the service (e.g., effectiveness in addressing a need,
breadth of service hours, and geographic accessibility, etc.) and
the attendant feasibility (financial and logistic) for the patient.
To this end, only some HBPC and SSA respondents indicated
operating from curated lists of pre-screened or “preferred” pro-
viders. A Program Manager for an HBPC practice explained
that the provider selection process is highly reliant on informal
networks, and thus often unsystematic and “Kind of trial-and-
error: Like, who has worked well, who hasn’t? [ ...] We get
that feedback from our patients as well. So, when they tell us
that a service is or a company is not doing well, that immedi-
ately is spread throughout the team.”
Other respondents expressed a tendency to give patients a
non-curated list of local service providers or refer them to
CCUs, emphasizing the need to give patients (with the func-
tional capacity) or their family members/caregivers agency to
make selections based on their own preferences. Respondents
emphasized the need to keep provider contact lists constantly
updated, a task a Program Manager with an AAA described as a
‘full-time job’ in-and-of-itself, particularly as turnover and
organizational changes internally and among partners were
described as endemic issues. However, respondents from only
three of the surveyed organizations indicated having a staff
member devoted to maintaining provider referral lists. Addi-
tionally, clarity in HIPAA violations, discussed in the next
section, proved to be a considerable impediment in the service
referral processes for many respondents.
Navigating and reckoning with HIPAA. Respondents frequently
discussed their processes of coordination through the prism
of HIPAA, referring to ways in which they navigated organiza-
tional information systems and attendant policies to exchange
patient information, relaying their mixed understandings of
which kinds of patient information could and could not be
(digitally) transmitted. Respondents commonly expressed fears
over their institutions receiving fines, or the respondent him/
herself being disciplined or even fired, for HIPAA violations,
perceiving HIPAA as a nebulous barrier to efficient and clear
coordination for non-medical services (Cohen & Mello, 2018;
Kapushion, 2003). Respondents proposed greater cross-
institution dialog on specific information needs for referrals
as a solution, while illuminating a broader need for education
on HIPAA’s exact purposes, stipulations, and applications.
I think sometimes it’s just the barriers as far as who has access to
the information. A lot of times I’ll hear people say, “Oh HIPPA,
HIPPA.” Well, really if you read the HIPPAA, you know if your
information is [for] the treatment and care of the patient, you can
share that. I mean, if we’re both taking care of the patient; we can
Ezell et al. 3
Table 2. Overview of Interview Themes.
Navigating Activities Around Nonmedical Need
Identification and Coordination
Challenges and Barriers to Coordinating Care
for Nonmedical Services Recommendations and Shifting Paradigms Other Observations and Contextual Findings
In-home care, meal delivery, non-emergency
transportation, and housing were the most
commonly requested non-medical services.
Transportation was often expensive and
difficult to coordinate (limited hours and
geographic services areas)—an issue for
both city and semi-rural patients.
Using bi-directional digital referral systems—
with participation from all involved in the
continuum of care—to coordinate and track
delivery of services, and implement “village”
models to better aggregate care and
resources.
In-home care was described as typically being
plentiful and easy to locate and coordinate,
among the few to be cited by respondents as
such.
Needs assessments were done at baseline
(usually a home visit) to determine non-
medical services needs.
Housing was hard to acquire (limited
options),old and substandard, and expensive
relative to what most older adults could
afford.
Trainings on recognizing the non-medical needs
of older adults and on how to access available
local resources to address these needs, and
advocate for macro-policy changes for needs
such as (supportive) housing.
HBPC, SSA, and MCO respondents generally
felt that their staff colleagues were
knowledgeable about older patients’ non-
medical needs, but not necessarily how to
access resources to meet these needs.
Referrals to and from CBOs typically being
carried out via phone or fax; data captured in
internal (not bi-directional) electronic
systems or institutional databases.
Tbroad HIPAA concerns—some professionals
refusing/slow to send/receive patient
information (sometimes without an
objectively valid basis), stymieing
coordination processes.
Holding ongoing case conferences for medical
and non-medical services coordinators to
discuss specific patients/clients and efforts to
address their care.
Many providers, especially medical clinicians,
were not entirely clear on what was meant
by “non-medical services” (they referred to
physical therapy, durable medical equipment,
etc.), potentially highlighting limited
recognition of non-medical needs/service
typologies.
Providers and coordinators typically not
following up with the counterpart on the
status or outcome of referrals.
State government-level issues related to a
budget instabilities, winnowing pool of non-
medical services providers.
Working to increase report and buy-in with
the government to help establish better
reimbursement protocols, and introducing
Health Information Exchanges to address
broader communication woes.
Local government was broadly supporting
nascent “village” model which put
information assistance for older adults in the
hands of community members, furnishing
communities with city-owned buildings and
administrative resources.
Heavy dependence on personal experiences
and word-of-mouth in deciding whom to
make referrals to, considering service
quality, availability, financial feasibility, and
industry reputation.
Inter-professional discord and conflicts,
particularly between medical and CBO
stakeholders, over who is ultimately
accountable for coordinating and initiating
communication about patients’ non-medical
service needs.
Creating new external partnerships (e.g.,
contracting with Uber or Lyft for handicap-
accessible, non-emergency patient
transportation) to create more accessible,
user-friendly options.
Most respondents expressed feeling
emotionally supported supported and
understood by fellow staff, highlighting that
most barriers were originating from an
institutional/inter-professional level.
4
talk to each other. It’s not like you’re the insurance company or the
biller or whatever. [ ...] It’s really about understanding what could
be shared because I think sometimes it’s just kind of a scapegoat to
say, “Oh, it’s HIPPA. I can’t share that.” An Executive Leader with
an HBPC Practice
Managing Challenges and Barriers to Non-medical
Services Care Coordination
Limited communication and engagement between organizations and
practices. Overall, most respondents indicated that they typi-
cally did not get, or did not consistently get, follow-up from
their counterparts on the status or outcome of referrals for non-
medical services. One HBPC administrator framed this
dynamic as a substantial challenge, speaking to a “siloing”
effect (Ezell et al., 2013): “You make referrals and most places
are not really, really good at like letting you know, ‘Oh yeah,
we did this and that.’” A social worker for a HBPC practice
further signals the following, keying-in on broader issues with
the nation’s fragmented, undirected healthcare system:
Honestly, it’s hard to get individual [providers] to take one more
step, even if it’s in their best interest. Like, we fight that iner-
tia ...every day. It’s hard for me [ ...] to call one more time, 3
more times, 7 more times; like if it just was a byproduct of the work
I was already doing, great.
These findings are in line with previously cited observa-
tions, signifying that communication between agencies was a
central, seemingly existential, challenge. CBO practitioners
and care coordinators from SSAs gave a contrasting perspec-
tive on communication with medical providers: A CBO direc-
tor for an agency providing in-home care services explained, “I
think there have been efforts to get the community-based side
to send information over to, to the physicians, but it gets sent
into the abyss.”
A Business Development Director with an AAA, in consid-
ering the reason for the communication gaps with medical
clinicians, suggested that “The medical world doesn’t yet value
the community-based services yet,” while adding, “I don’t
think that connection’s being made that, once a person gets
home, they might have additional challenges with being com-
pliant with their discharge plans.” Other respondents cited
more structural issues related to unwieldy clinical volume and
capacity as being the primary culprit to this communication
chasm. Of note, most care coordination respondents laid their
criticisms at physicians broadly and not explicitly at HBPC
physicians.
HBPC and SSA respondents emphasized that direct follow-
up on services provisioned was expected only when something
“bad” had transpired, such as a provider not showing up on
time or the patient not answering the door. Indeed, respondents
indicated that most follow-ups consisted of a patient or a care
coordinator calling to provide an update on a particular aberra-
tion or lapse associated with delivery of the service (or lack
thereof). A Program Director/Care Coordinator with a CCU
noted: “If they [the patients] let us know, then we can make
changes, but sometimes it’s not ‘til somebody makes that quar-
terly call and we hear, ‘Oh, they are not happy.’”
Communication concerns were also frequently directed at
state and local government agencies, with one CCU supervisor
saying the following about the Illinois State Department of
Aging:
I don’t know if they’re just that busy, or if they—this is going to
sound bad—[they] don’t respect what we do or acknowledge [it].
[...] There is no [support] arranging of services. There is no
monitoring. There is no managing. In determining eligibility for
services, we do not get acknowledgment that [documentation] was
received. [ ...] We don’t have names. We don’t know who and
what it belongs to.
Macro-level and professionalization fissures. CBO and SSA
respondents described frequently grappling with workforce
retention and professional development issues, as they faced
increasing competition from other organizations, in particular
“new” MCOs, and traversed state government policy limita-
tions. SSA respondents described a professional ceiling in their
field for certain positions, such as care coordinators, which had
limited advancement options and required only a high school
degree.
The State determines what the payment is for like the aid, and the
homemakers in the Community Care Program (an Illinois-based
in-home program for older adults). And you can make more money
at McDonald’s. And in my area it’s not easy to qualify [for the
Community Care Program]—you have to be pretty poor to qualify
for the Community Care Program. But the other problem in our
area is, even let’s say you qualify for six [meal providers], 24 hours
a day: Sometimes, they can’t find people to fill the $8 an hour jobs,
because they’re working at McDonald’s.—A Physician with an
HBPC Organization
Staff turnover, described earlier as a persistent issue, also
resulted from the general career instability felt by staff. A CBO
Executive Director overseeing an in-home care/meal delivery
program stated:
If we don’t have enough caregivers or the right caregiver, we may
have to turn away work. Kind of the flip side to that is if we don’t
have enough clients, and we have too many caregivers, then we
don’t have work for them. [ ...] So, people sometimes may work
with multiple agencies, or if they don’t have work here, they’ll go
lurk/work elsewhere. So, just not being able to provide that con-
sistency is hard for people.
Moreover, professional limitations in meeting patients’
needs was stated as a barrier for improved service. In short,
staff may acutely know the needs of their patients, but may be
fundamentally unable to access the resources to meet these
needs, creating a professionalization imbalance.
Ezell et al. 5
The doctors, the whole clinical team, and even a lot of the research
side, have an understanding of what the needs are. [ ...] Often-
times, why people are in the hospital; their chronic medical issues
are a result of unmet social needs. [ ...] Our struggle, sometimes,
is then identifying where; what do we do? How do we do it?
What’s an appropriate intervention? We might not have that
knowledge and skillset.—A Social Worker for an HBPC Practice
Challenges coordinating non-emergency transportation. Non-
emergency transportation (e.g., public transportation, paratran-
sit, private vendors, etc.) was cited by many respondents as the
most difficult for both providers and patients/clients to identify
and coordinate. More specifically, non-emergency transporta-
tion was described as: 1) expensive; 2) confusing and tedious
regarding reimbursement; 3) unreliable (e.g., late or incorrectly
routed); 4) often not “handicap-friendly”; 5) confined to lim-
ited hours; and 6) having restrictive geographic pick-up/drop-
off service zones.
[It is] a very complex process. It can be obnoxious [ ...] but we do
it if we feel [patients] are unable to do it themselves. We call [and]
ask for three companies within [the patient’s] zip code that [can]
potentially take them. So they give us names and numbers of these
transportation companies, and then we have to call the patient, and
I have to call the company directly to see if they have the avail-
ability in their schedule and serve [the patient’s] area, [going] to
[our organization], or wherevertheyneedtogo.ASocial
Worker Supervisor with an Integrated Care Organization
While limited access to non-emergency transportation
tended to be magnified in Chicago’s outlying semi-rural areas,
most described the challenge as an issue of fragmentation and
limited servicing quality. As a Program Director/Care Coordi-
nator with a Care Coordinator Unit explained:
Just basic stuff, like [you] have to go get groceries . . or even a
doctor’s visit or anything that—especially during the winters when
it’s hard to actually get out of the home, or when it’s really, really
hot outside [and] you need to not wait for the bus for an hour in
order for you not to dehydrate and maybe experience a need for an
ambulance. [ ...] Sometimes, people wait 2 hours for a
ride ...before and after. [They] don’t get to their appointments
on time, so that’s always a huge issue.
As a solution to transportation service challenges, respon-
dents highlighted or proposed discussions on alternate, private
solutions, such as contracting with ride-sharing services (e.g.,
Uber or Lyft) to meet patients’ non-emergency transportation
needs.
Obstacles to obtaining and maintaining housing. Concerns were
expressed by respondents over acquiring and maintaining suit-
able housing for patients. These concerns were amplified by
respondents working with city-dwelling (i.e., urban) patients, a
population described as being relegated to housing that was old
and substandard, expensive, and limited in availability and
accessibility options. This was described as a particular issue
for Chicago’s Black/Latino older adults who contend with the
city’s long-standing patterns of deep residential segregation
and commercial decline (Sandoval, 2011).
A CBO Program Manager/Case Manager from a nonprofit
home repair organization explained, in reference to Chicago’s
low-income, predominantly Black/Latino south and west sides,
“They’ve been the neglected communities for years, and years,
and years [ ...] in terms of city services. [ ...] in terms of hous-
ing. It’s the oldest housing stock in the city [ ...] We literally are
serving people who are aging inside their aging homes.” This
respondent had a growing waitlist of increasingly complex repairs
needed on homes and described struggling to meet the demand.
This observation is particularly salient given that a heatwave in
Chicago in 1995 killed over 700 individuals, most of whom were
low-income racial/ethnic minorities living in isolation in inade-
quate, poorly ventilated housing (Browning & Cagney, 2002).
An MCO Program Manager discussed other conjoining
intricacies, also socioeconomic in nature, associated with hous-
ing in the Chicago area:
[We] had a guy that was living in [an apartment]; it was crawling
with bed bugs. [He was] living in a room out in the back, with
alleged friends and so forth, and it took quite a while, but we finally
got him into a supported living situation. [ ...] It’s affordability.
I mean, because of the population we’re working [with]: We’re
working with a Medicaid-only population. So if they’re Medicaid-
only, that means they’re most likely seniors and persons with dis-
abilities whose income is Supplemental Security Income SSI;
which is $734 a month. Okay, you try to find an apartment [with
that]. I did a study, and the only place actually the person could live
was in far southern Illinois.
Of note, in sharp contrast to the fraught housing and trans-
portation landscapes described here by respondents, in-home
care services were regarded by HBPC, SSA, and MCO respon-
dents as plentiful and relatively straightforward to coordinate
and fund/reimburse.
Considering the Scope of Macro-Level Influences and
Issues
Barriers to funding and governmental reimbursement. Respondents
raised frustrations with the lack of funding, engagement, and
general support from the government—particularly the state
government—in negotiating and approving reimbursement for
non-medical services and care coordination. These challenges,
and their effects, tended to be more pronounced among non-
profits and smaller practices, often resulting in patients receiv-
ing insufficient levels of care.
What people need on an ongoing basis is the bathing, dressing,
grooming, meals [ ...]. But that’s not where the primary funding
is. Medicare doesn’t cover that [ ...]. People that are in govern-
ment [programs] probably could use more services than what
they’re eligible for [ ...] Except the availability is not there. I think
that is a lost art. [ ...] If we want to cut costs or be efficient, we
6Research on Aging XX(X)
have to take these services out into the community—A Program-
ming Director with a CBO
Most respondents made reference to the adverse funding
impacts of the then-active Illinois state budget impasse, which
dated back to July 2015, including a severe winnowing of
medical and non-medical service programming (Beirl, 2017).
CBO respondents expressed feeling the brunt of the budget
stalemate, which resulted in delays in payments and reductions
in funding levels, and stymied efforts to reliably forecast bud-
gets, a recurrent, long-running issue in the state. A Program
Director with an MCO framed the fissures in the payer land-
scape as follows:
Where we’re at today, the MCOs have to figure out how they are
going to fund and get the resources they’ve always been giving out
in the community. [ ...] You have the whole home-delivered meal
situation [and] there used to be resources for fans or air condi-
tioners. [ ...] All those public health departments that really did
have some key initiatives or program have had either cutbacks or
closed down completely because of the lack of funding. And so
what happens is, who’s picking that up? [ ...] [We’ve] escalated it
to the national contracting department. They don’t understand this
world. But as they get into the marketplace, they are starting to see
how this is going to affect them.
Other observations and proposed solutions. Respondents, when
considering other potential solutions to the issues raised here,
cited the potential usage of “village” models (C. L. Graham
et al., 2014; Scharlach et al., 2012), centralized community
spaces employing lay individuals and community members
with “insider” knowledge to build capacity among older adults
through education and referrals to local resources. Among the
key proposed functions of the villages would be to assist pro-
viders in finding isolated older adults, an outsized issue in
large, geographically fragmented cities like Chicago that are
characterized by suburban sprawl (Frumkin, 2016; Zhang,
2001). An executive leader with an AAA described her view
of this model:
The reality is, we don’t know where everyone is. [ ...] It’s one
thing to bring them food. But if they aren’t being called by mem-
bers of the community, they don’t feel part of it; they’re still not
part of the community. That’s the engagement piece involving the
community. But using our brick and mortar. [ ...] The community
is telling us where they are. ‘Cause everybody knows somebody on
their block.
In addition to the village model for older adults, respondents
stated that greater access to shared learnings and engagement,
“case conferencing” opportunities, and trainings on how to
access local resources was of strong interest. Case conferences
were envisioned as either occurring through digital technolo-
gies or in-person. A HBPC physician who was involved in
several case conference collaborations explains:
T [Staff] know the services are there, they might not know the who,
the what, or, does the patient qualify, who do I call to get this, et
cetera. But they know who to ask, whether it’s the nurse or the
coordinator, as far as, ‘Hey, this is what I’m looking for, where do
you suggest, where do we go for it,’ et cetera. So, if some member
of the team doesn’t know ...‘this is what the problem is, what do
you guys suggest?’
As proposed by respondents, through this modality, care
coordinators, medical practitioners, and mental health profes-
sionals could periodically convene to discuss specific cases to
pinpoint and troubleshoot areas of concern, and also advocate
for and engage in collaborative planning and programming.
This would allow for more comprehensive care for areas where
service is lacking, such as some of the under-resourced racial/
ethnic minority areas referenced here. These solutions, and
others, are explored in greater depth in the Discussion.
Discussion
Findings from this qualitative research suggest that care coor-
dination for non-medical services is both largely individualistic
and organization-specific, with few uniform, consistent social
or medical policies or protocols governing referral-making or
follow-up practices between providers and practices that pro-
vide care for older adults. Our results also demonstrated the
weight of a variety of factors, such as the quality and breadth of
options for non-medical services, communication standards
and expectations between and within organizations and prac-
tices, HIPAA guidelines, and government guidance, in acting
as salient facilitators or barriers to care coordination. Crucially,
these findings further illuminate distinctions in stakeholders’
navigation of actual and perceived barriers, insofar as respon-
dents made assumptions about processes underlying coordina-
tion and the intentions of their counterparts in the care
continuum and acted (or not) accordingly.
The most commonly requested non-medical services were
in-home care, meal delivery, non-emergency transportation,
and housing, aligning with work from others (K. Black et al.,
2015; Robison et al., 2014; Wacker & Roberto, 2013), which
respondents in our study frequently described as both difficult
to identify high quality resources for and to coordinate delivery
for (Ploeg et al., 2017). This finding illustrates that older
adults’ most quintessential needs are fundamentally related to
their daily activities and quality of life—and may be fundamen-
tally unmet, or met less effectively and efficiently than is desir-
able. As respondents emphasized, making a viable connection
to these services for older adults was often a fraught process
due to informational and relational chasms (Ploeg et al., 2017).
To this end, in our study, the vast majority of referrals for these
services were carried out via phone and fax, methods which
respondents regarded as dated, inefficient, and as fomenting a
lack of clarity and transparency. While respondents expressed
an interest in digital technologies to aid in referral-making
when queried, most recognized that implementation of such a
platform would face resistance from their financial and/or legal
leadership (due to patient privacy concerns, etc.). Currently,
Ezell et al. 7
there are roughly a dozen established vendors providing digital
platforms for initiating, tracking, and following-up on non-
medical services referrals, including NowPowand Purple
Binder, which warrant further research with the older aging
population to determine cost-effectiveness in coordination, ser-
vice engagement, and health outcomes (Cartier et al., 2020;
Thomas-Henkel & Schulman, 2017).
Across each stakeholder group, respondents cited non-
emergency transportation and housing as the most difficult
non-medical needs to address, raising concerns around the lim-
ited availability of accessible, affordable options. In the case of
transportation, respondents recognized the need to think more
creatively about solutions, in looking toward ridesharing ser-
vices as potential place-fillers for lacking extant public and
private-sector services. Presently, UberHealth, a service from
Uber, is being piloted in selected cities across the U.S. as a way
to create broader, more user-friendly and cost-efficient trans-
portation options for patients. Evaluation of the performance
and scalability of platforms like this, with a specific emphasis
on functionality in low-density and under-resourced areas, is
needed.
The limited and low-quality housing stock that our respon-
dents characterized was viewed as more of a matter with little-
to-no immediate solutions; this, at least partly, a reflection of
Chicago having some of the most expensive, antiquated, spar-
sely distributed, and racially/ethnically segregated housing
among large U.S. cities (Browning & Cagney, 2002; Zhang,
2001). However, government subsidies for (supportive) hous-
ing for older adults, can help address this need; one place to
begin this effort would be to expand the U.S. Department of
Housing and Urban Development’s Section 202 Supportive
Housing for the Elderly Program which provides financial
supplements for the development and restoration of supportive
housing for vulnerable older adults and subsidies for renters.
Patterns of misconception, ambivalence, and perceived bar-
riers in relation to HIPAA—in terms of which kinds of patient
information could be transmitted and who was responsible for
the exchange—were singled-out as a prime deterrent in stake-
holders’ ability to effectively and efficiently exchange patient
information. Researchers have previously assessed the myriad
complexities around the implementation of HIPAA and how
ignorance about compliance hampers innovation, and has cri-
tiqued HIPAA’s general operational and communication effi-
ciencies (Cohen & Mello, 2018; Kapushion, 2003; Terry,
2017). In considering potential fixes to the particular chal-
lenges poised by HIPAA in care coordination, respondents
spoke to the need for general education on HIPAA and the need
for organizations to subsequently convene and devise intuitive
ways to handle and exchange specific threads of necessary
patient information without jeopardizing patients’ privacy. A
possible interface here would be participation in Health Infor-
mation Exchanges (HIEs), which allow the electronic sharing
of information among health care organizations to reduce
health care costs and improve health care delivery (Adjerid
et al., 2016). Studies suggest that community-based HIEs, in
particular, which include a wider catchment of organizations
providing care, are more likely to confer benefit compared to
vendor-based HIEs and allow increased communication
between organizations in a HIPPA-compliant manner (Health
et al., 2017; Menachemi et al., 2018). Given the limited and
misdirected knowledge in relation to HIPAA that was observed
in this study, a HIE intervention in this space would need to be
paired with more targeted education to providers on the rules
and parameters associated with HIPAA.
At the nucleus of the majority of the challenges cited in the
present analysis were issues related to institutional gatekeeping
and a subsequent siloing, rather than diffusion, of information
and knowledge (Sherry et al., 2016). In particular, there was a
notable disconnect between HBPC and CBO practitioners
regarding professional responsibilities when it came to
follow-up, this being a function of interprofessional isolation
(Ezell et al., 2013; Lau et al., 2018; Sheikh et al., 2018). Indeed,
follow-ups on status were opaque and distinctly haphazard,
with case tracking emerging sporadically or being conditional
in nature, occurring at general needs re-assessments, or when
some relative anomaly, such as a “no show” (on behalf of the
provider or the patient), took place. To address this communi-
cation chasm, CBO respondents suggested that fundamental
transformations in philosophy were necessary among both
medical practitioners and policymakers in recognizing the
importance of addressing the non-medical needs of older
adults, and a will to devote resources accordingly. To achieve
this critical paradigmatic shift, administrative efforts to routi-
nize inter-organizational case conferences, and thus engender a
collaborative mindset across entities (Reuther et al., 2012; Stott
& Quinn, 2017; Weppner et al., 2018), could be especially
valuable.
Finally, in terms of systemic solutions, several studies sug-
gest village models may be effective in improving capacity and
quality of life among older adults, but to date longitudinal data
on how these models impact specific health outcomes and
one’s ability to age in place are limited (C. L. Graham et al.,
2014; C. Graham et al., 2018; Rosenwohl-Mack et al., 2020).
Along these lines, long-term evaluation of village models is
recommended, with a particular focus on how care coordinators
can be best integrated and supported to facilitate older adults’
uptake of the village resources.
There are several study limitations to this study. First, the
study was conducted in the greater Chicago area, a large, pri-
marily urbanized and segregated region; thus, the results may
not contextuallyy apply to the care coordination tapestry in
other locations. Second, the majority of respondents were
director-level or higher; thus, there are limits to what can be
inferred about the experiences and perspectives of lower-level
staff. Accordingly, future work in this space should endeavor to
catalog the perspectives and experiences of a wider hierarchy
of professionals such as care coordinators and administrative"-
front desk” staff.
In conclusion, findings from this study provide unique
insights into care coordination for non-medical services for
older adults, such as non-emergency transportation and hous-
ing, illustrating how linkage is fluid and influenced by
8Research on Aging XX(X)
experiences with and perceptions of service accessibility and
affordability, cross-institutional synergies, and dynamic social
and medical policy milieus. Moreover, despite the availability
of digital technologies for referral-making and case tracking,
stakeholders involved in care coordination of these services
may rely heavily on phone calls and fax, which may substan-
tially impact transparency, operational efficiencies, and have
downstream impacts on care quality. Given the greatly elevated
socio-medical vulnerability cultivated by COVID-19 on older
adults and the immobility generated via attendant policies
designed to mitigate the pandemic, multilevel approaches to
addressing these factors takes on a new level of importance.
Along these lines, further empirical investigation is needed to
further characterize barriers and opportunities to addressing the
social determinants of health among older adults and enhance
the salience and professionalization of care coordination and
follow-up for non-medical services, with attention to the likely
lingering social and medical impacts of COVID-19 on the older
adult population in the years to come.
Appendix 1. Selected Semi-Structured
Interview Questions
1. How, if at all, do you assess clients’/patients’ nonme-
dical (i.e., community-based/social) needs? How often
do you re-evaluate/re-assess their community/social
needs?
2. From your experience, what are the most commonly
requested community-based/social service(s) or other
identified (social) needs for your older adult clients/
patients.
a. Which services needs are relatively easier to
address? Why?
b. Which services needs are relatively harder to
address? Why?
3. When you encounter a client/patient who is in need of
community-based/social services, what do you do?
Please walk me through the (coordination/communi-
cation) process from the initial request for services to
the delivery of the services.
4. When making a referral, how do you identify the (best)
community-based/social services provider?
5. How, if at all, do you track community-based/social
services referrals and services provided for your cli-
ents/patients?
6. What kind of case management around community-
based/social services, if any, do you offer for your
clients/patients, and what does that involve?
7. How is a referral (typically) made to the community-
based/social services provider (e.g. phone call by the
client/patient or their family/caretaker, phone call by
you; fax, email by your organization, etc.)?
8. Do you receive information about the status of the
referral after it is made and are you notified when
services will begin? Do you follow-up about the status
of the referral? Why and how; or why not?
9. What information would you like to know and what do
you feel the community-based/social services provider
needs to know? How would you like to receive this
information (phone calls, fax, electronic, etc.)?
10. Is there any particular value you see in coordinating
community-based/social services with your practice in
terms of cost savings, such as reduced emergency
department visits, hospitalizations, etc.? If so, are you
able to cost-effectively coordinate these services for
your patients?
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, author-
ship, and/or publication of this article.
ORCID iD
Jerel M. Ezell https://orcid.org/0000-0002-9884-7909
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Author Biographies
Jerel M. Ezell is an assistant professor at Cornell University in the
Africana Studies and Research Center and the Cornell Center for
Health Equity. Dr. Ezell’s research focuses on how professional sta-
keholders engage and provide resources to historically marginalized
and stigmatized populations.
Samiha Hamdi is a graduate student in Global Development at Cor-
nell University. Her community-based work focuses on environmental
and neighborhood health.
Natasha Borrero is a medical resident at Montefiore Medical System
in the Department of Family and Social Medicine. Dr. Borerro’s clin-
ical practice and research focuses on health education and health
promotion in disadvantaged urban communities.
Ezell et al. 11
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There is need for effective venues to allow teams to coordinate care for high-risk or high-need patients. In addition, health systems need to assess the impact of such approaches on outcomes related to chronic health conditions and patient utilization. We evaluate the clinical impact of a novel case conference involving colocated trainees and supervisors in an interprofessional academic primary care clinic. The study utilized a prospective cohort with control group. Intervention patients (N = 104) were matched with controls (N = 104) from the same provider’s panel using propensity scores based on age, gender, risk predictors, and prior utilization patterns. Clinical outcomes and subsequent utilization patterns were compared prior to and up to 6 months following the conference. In terms of utilization, intervention patients demonstrated increased visits with primary care team members (p = .0002) compared with controls, without a corresponding increase in the number of primary care providers’ visits. There was a trend towards decreased urgent care and emergency visits (p = .07) and a significant decrease in the rate of hospitalizations (p = .04). Patients with poorly-controlled hypertension saw significant decreases in mean systolic blood pressure from 167 to 146 mm Hg. However, there were no differences between the intervention and control groups. Intervention patients with diabetes demonstrated a nonsignificant trend towards decreased hemoglobin A1c from 9.8 to 9.4, when compared with controls. Interprofessional case conferences have potential to improve care coordination and may be associated with improved disease management, decreased unplanned care, and overall reduced hospitalizations.
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Health care organizations are increasingly implementing programs to address patients' social conditions. To support these efforts, new technology platforms have emerged to facilitate referrals to community social services organizations. To understand the functionalities of these platforms and identify the lessons learned by their early adopters in health care, we reviewed nine platforms that were on the market in 2018 and interviewed representatives from thirty-five early-adopter health care organizations. We identified key informants through solicited expert recommendations and web searches. With minor variations, all platforms in the sample provided similar core functionalities: screening for social risks, a resource directory, referral management, care coordination, privacy protection, systems integration, and reporting and analytics. Early adopters reported three key implementation challenges: engaging community partners, managing internal change processes, and ensuring compliance with privacy regulations. We conclude that early engagement with social services partners, funding models that support both direct and indirect costs, and stronger evidence of effectiveness together could help advance platform adoption.
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Objectives: The purpose of this systematic review was to synthesize the evidence on experiences of aging in place in the United States. Design: Systematic review and meta-ethnography of qualitative studies. Data sources: We searched six bibliographic databases (PubMed, Embase, PsycINFO, CINAHL, Web of Science, Sociological Abstracts), with no limits on publication date. Eligible studies reported peer-reviewed qualitative research on experiences of aging in place in the United States with full-text available in English. Review methods: Three reviewers independently used Covidence software to screen titles and abstracts followed by full texts. We assessed quality and risk of bias using a modified version of the Joanna Briggs Institute Checklist for Qualitative Research. Qualitative data analysis was conducted using meta-ethnography, following Noblit and Hare's seven-step method of translation and synthesis to generate a novel conceptual model. Results: Of 2659 papers screened, 37 unique studies were eligible for inclusion, reported in 38 publications. The studies were conducted in 16 states and published between 1994 and 2018. The included samples represented 1199 participants in total, with mean ages ranging from 48 to 91 years. The gender of the samples ranged from 20% to 100% female, with a median of 77%. One-third of the included studies did not report participants' race/ethnicity, and half of the remaining study samples were at least 90% white; however, 20% of the studies focused exclusively on experiences of racial/ethnic minority older adults. Using meta-ethnography, we developed a new conceptual model of aging in place in the United States as a dynamic process of balancing threats and agency in relation to experiences of identity, connectedness, and place. We found that people aging in place were engaged in significant work to cope with unpredictable needs and challenges by changing their mindset, adapting their home environment to accommodate new needs, and finding different ways to connect with important people in their lives. Agency was shaped by resources and restrictions on choice, and where threats to aging in place outweighed an individual's sense of agency, the consequences included feelings of uncertainty, isolation, and dislocation. Conclusions: To the best of our knowledge, this is the first systematic review of qualitative studies to evaluate experiences of aging in place in the United States. The findings of our meta-ethnographic synthesis led to the development of a new conceptual model of aging in place highlighting the dynamic tensions involved in balancing threats and agency.
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Importance The United States spends more on health care than any other country, with costs approaching 18% of the gross domestic product (GDP). Prior studies estimated that approximately 30% of health care spending may be considered waste. Despite efforts to reduce overtreatment, improve care, and address overpayment, it is likely that substantial waste in US health care spending remains. Objectives To estimate current levels of waste in the US health care system in 6 previously developed domains and to report estimates of potential savings for each domain. Evidence A search of peer-reviewed and “gray” literature from January 2012 to May 2019 focused on the 6 waste domains previously identified by the Institute of Medicine and Berwick and Hackbarth: failure of care delivery, failure of care coordination, overtreatment or low-value care, pricing failure, fraud and abuse, and administrative complexity. For each domain, available estimates of waste-related costs and data from interventions shown to reduce waste-related costs were recorded, converted to annual estimates in 2019 dollars for national populations when necessary, and combined into ranges or summed as appropriate. Findings The review yielded 71 estimates from 54 unique peer-reviewed publications, government-based reports, and reports from the gray literature. Computations yielded the following estimated ranges of total annual cost of waste: failure of care delivery, $102.4 billion to $165.7 billion; failure of care coordination, $27.2 billion to $78.2 billion; overtreatment or low-value care, $75.7 billion to $101.2 billion; pricing failure, $230.7 billion to $240.5 billion; fraud and abuse, $58.5 billion to $83.9 billion; and administrative complexity, $265.6 billion. The estimated annual savings from measures to eliminate waste were as follows: failure of care delivery, $44.4 billion to $93.3 billion; failure of care coordination, $29.6 billion to $38.2 billion; overtreatment or low-value care, $12.8 billion to $28.6 billion; pricing failure, $81.4 billion to $91.2 billion; and fraud and abuse, $22.8 billion to $30.8 billion. No studies were identified that focused on interventions targeting administrative complexity. The estimated total annual costs of waste were $760 billion to $935 billion and savings from interventions that address waste were $191 billion to $282 billion. Conclusions and Relevance In this review based on 6 previously identified domains of health care waste, the estimated cost of waste in the US health care system ranged from $760 billion to $935 billion, accounting for approximately 25% of total health care spending, and the projected potential savings from interventions that reduce waste, excluding savings from administrative complexity, ranged from $191 billion to $282 billion, representing a potential 25% reduction in the total cost of waste. Implementation of effective measures to eliminate waste represents an opportunity reduce the continued increases in US health care expenditures.
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Objective Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. Design Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. Setting Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. Participants A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. Measurements Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. Results PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. Conclusions Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD’s unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.
Background: Older adults with complex medical conditions are vulnerable during care transitions. Poor care transitions can lead to poor patient outcomes and frequent readmissions to the hospital. Factors contributing to suboptimal care transitions: Key factors related to ineffective care transitions, which can lead to suboptimal patient outcomes, include poor cross-site communication and collaboration; lack of awareness of patient wishes, abilities, and goals of care; and incomplete medication reconciliation. Fundamental elements for effective care transitions put forth by The Joint Commission for effective care transitions include interdisciplinary coordination and collaboration of patient care in care transitions, shared accountability by all clinicians involved in care transitions, and provision of appropriate support and follow-up after discharge. Review of four existing models of care transitions: Consideration of four existing care transitions models representing different health care settings-Care Transitions Intervention® Guided Care, Interventions to Reduce Acute Care Transfers (INTERACT®), Home Health Model of Care Transitions-revealed that they are important but limited in their impact on transitions across health care settings. Proposal of the integrated care transitions approach: An innovative approach, Integrated Care Transitions Approach (ICTA), is proposed that incorporates the best practices of the four models discussed in this article and factors identified as essential for an effective care transition while addressing limitations of existing transitional care models. ICTA's four key characteristics and seven key elements are unique and stem from factors that help achieve effective care transitions.
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Objective: Widespread health information exchange (HIE) is a national objective motivated by the promise of improved care and a reduction in costs. Previous reviews have found little rigorous evidence that HIE positively affects these anticipated benefits. However, early studies of HIE were methodologically limited. The purpose of the current study is to review the recent literature on the impact of HIE. Methods: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to conduct our systematic review. PubMed and Scopus databases were used to identify empirical articles that evaluated HIE in the context of a health care outcome. Results: Our search strategy identified 24 articles that included 63 individual analyses. The majority of the studies were from the United States representing 9 states; and about 40% of the included analyses occurred in a handful of HIEs from the state of New York. Seven of the 24 studies used designs suitable for causal inference and all reported some beneficial effect from HIE; none reported adverse effects. Conclusions: The current systematic review found that studies with more rigorous designs all reported benefits from HIE. Such benefits include fewer duplicated procedures, reduced imaging, lower costs, and improved patient safety. We also found that studies evaluating community HIEs were more likely to find benefits than studies that evaluated enterprise HIEs or vendor-mediated exchanges. Overall, these finding bode well for the HIEs ability to deliver on anticipated improvements in care delivery and reduction in costs.