Original Paper

A Focus Group and Key Informant Interview Study

of Experience with the NYC Health & Hospitals Options Program

Diana Romero, PhD, MA Kathleen Flandrick, DrPH

Diana Romero is Associate Professor in the Department of Community Health and Social Sciences at the City University of New York (CUNY) Graduate School of Public Health and Health Policy, and affiliated faculty member of the CUNY Center for Systems and Community Design, New York, NY. Kathleen Flandrick is Senior Research Associate in the Center for Urban Research at the Graduate Center of the City University of New York (CUNY) in New York, NY. Please address all correspondence to Diana Romero, CUNY Graduate School of Public Health and Health Policy, 55 W. 125th St, Rm. 802, New York, NY; 10027.

Running head: Health care for uninsured communities

References: 28 Tables: 2 Boxes: 1 Figures: 4

  

   Abstract: Objectives. This research aims to understand undocumented immigrant participants’ experiences, program participation levels, and desired improvements in the Options program, a sliding-scale fee-for-service model for un/under-insured patients operated by New York City (NYC) Health and Hospitals (H&H). Methods. Community-engaged, mixed-methods included: focus groups (FG) (n=144), post-FG surveys, and key informant interviews (KII) (n=15) across all five NYC boroughs. All FG and KII transcripts were analyzed following grounded theory methodology. Results. Key findings include low awareness of Options; a need for greater community-based outreach efforts; prioritization of access, quality, and affordability of services; and need for activities that address concerns regarding immigrant status and fear of high bills and long-term debt. Program utilization depends on access, affordability, and patient experience factors, with particular emphasis on stigma associated with being poor and un/underinsured. Discussion. Cultural humility training, diverse staff, and language services access may be key to increased program success.

Key words: Undocumented immigrants, uninsured, safety-net providers, focus groups, key

informant interviews, immigrants, Grounded Theory.

Abbreviations: New York City Health and Hospitals (H&H) Focus Groups (FGs) Key Informant (KI) Key Informant Interviews (KIIs) Community-Based Organization (CBO)

Since the 2010 implementation of the Patient Protection and Affordable Care Act (ACA),

the percentage of uninsured adults aged 18-64 in the U.S. declined from 21.2% in 2009 to

12.3% by September 2016.1 Despite this significant progress, over 28 million individuals remain

uninsured.2 Of those, 21% are non-citizens, including lawfully present as well as undocumented

immigrants.3 Over 60% of the nation’s approximately 11 million undocumented immigrants live

in 20 U.S. cities.4 Undocumented immigrants are ineligible for Medicaid and are prohibited from

accessing private health insurance coverage in the health insurance exchanges, increasing

reliance on safety-net providers such as public and non-profit health care systems and

community and federally qualified health centers.3,5–7 In light of expected reductions in

uninsured individuals due to ACA-associated coverage, decreased funding for safety-net

providers was anticipated.8–10 One study projected net revenue for safety-net hospitals would

decrease to just 0.5% by 2026, much of which would be due to a decrease in Medicaid

coverage and per-capita spending limits.11 Adding to these concerns have been subsequent

ACA- and tax reform-related policy changes implemented by the Trump administration, such as

reduction in cost-sharing subsidies, elimination of the individual mandate, and imposition of

work requirements on Medicaid recipients.12 While these changes do not pertain specifically to

undocumented immigrants, as they have not been eligible for government-sponsored health

insurance, they portend overall retrenchment of governmental commitments to addressing

population-specific health care needs. As safety-net providers see many sources of revenue

decline and uncompensated care continue to rise, urgent action is required reduce costs, ensure

quality patient experiences, and achieve population health. We present a case study of a New

York City (NYC) institution seeking to understand and improve outreach and health care

utilization among undocumented immigrants.

New York City Health and Hospitals (H&H) is the nation’s largest municipal health care

system offering care to all New Yorkers regardless of their ability to pay.5 The organization’s

Options program is a financial assistance program for H&H patients who are un/under-

insured.11 Options functions on a fee-for-service model, offering a sliding-scale payment

structure based on income and family size for a range of in-patient and out-patient services. As

care is offered irrespective of patients’ citizenship status, H&H is one of the city’s primary

providers of health care to its undocumented immigrant population, estimated at approximately

345,000 individuals.5

The majority of undocumented immigrants are employed, however, many have low

incomes and insufficient resources for housing, healthy food, and other necessities.14 Barriers to

care among undocumented immigrant populations include policy, health systems, and

individual-level factors (e.g., exclusion of undocumented immigrants within the ACA;

discrimination and bureaucracy; and cost, stigma, and fear, respectively).615 Past efforts to

make health care systems serving undocumented immigrants more accessible and cost-efficient

include creating low-cost or free health care programs, comprehensive insurance programs, and

expansion of subsidies to safety-net hospitals.6,16 State-wide insurance expansion efforts have

faced significant challenges and limited success, such as the demise of Vermont’s proposed

single-payer system, California’s proposal to allow undocumented immigrants to purchase

unsubsidized insurance through their exchange, Cover California, and the numerous changes—

both expansion and retrenchment—from the early 1990s to present day that Tennessee’s

TennCare program has undergone in its attempt to provide insurance to the uninsured and

uninsurable.17,18,19 It is therefore up to municipalities and safety-net providers to lead efforts to

increase access for these populations, including programs such as those through the Cook

County Health and Hospitals System, Los Angeles’ My Health LA program, or New York City’s

Options program. 5,13,20,21 Features of these programs often include incentivizing primary care

and connecting eligible individuals with select and coordinated primary, specialty, and

emergency care services at little (a few dollars) to no cost to the patient.5,13,20,21

Limited recent research exists examining health care programs for undocumented

immigrants post-ACA implementation. Using a mixed-methods, primarily qualitative study

design allowed critical nuances of unique challenges facing this population to emerge which also

provided important context to quantitative findings. A public health academic research

institution collaborated with H&H to assess uninsured patients’ utilization of their clinical

services and to identify the strengths and weaknesses of the Options program. This research

aimed to assess: 1) Options participants’ experiences, 2) reasons for lack of participation in

Options among eligible individuals, and 3) what eligible individuals want from the Options

program.

Methods

Sampling frame. As shown in Figure 1, a targeted sampling approach was used to collect data

from H&H Options participants and non-participants for the FGs. Health & Hospitals partners

selected the H&H facilities and community-based organizations (CBOs) across the five

boroughs, and identified target populations. Four FGs were conducted with each CBO, two

taking place at the H&H facilities and two taking place in the community at the CBO. This

allowed for stratification by Options program participation and language.* Two rounds of key

informant interviews (KIIs) were conducted. Sampling for the first round involved identifying

                                                            * An additional FG was included in the sampling frame in response to recommendations from a Steering Committee to H&H, bringing the total number of FGs conducted to 21.

experts familiar with Options and/or who serve populations eligible for Options. The second set

of KIIs included CBO partners’ senior management. These took place following preliminary

analysis of the FG data in order to contribute to the analytic process.

 Figure 1. Sampling frame.   

Data collection. Data collection methods included a combination of qualitative and

quantitative data from FGs, post-FG surveys, and KIIs. Data collection instruments were created

using a collaborative, engaged process between the research team, H&H, and CBO partners.

The FG topic guide examined participants’ general health care utilization, experiences, and

needs; and Options-specific awareness, experiences, and desired changes. A close-ended, 18-

item survey was administered to all participants following the FGs. Questions covered

demographic information, and enrollment in and assessment of experience with Options. These

data capture key characteristics of the FG participants, which are best measured categorically.

The KI interview guide ascertained the KIs’ familiarity with Options and constituent-specific

information, including health care needs, experiences with H&H and Options, and how to

increase Options accessibility.

Conduct of the focus groups and key informant interviews. All FGs were conducted at

H&H facilities or CBO sites and lasted approximately two hours. Research staff completed the

informed consent process with all participants. The FGs were conducted in English, Spanish,

French, Arabic, Bengali, and Fujianese. When in English, a research staff moderated. For FGs in

other languages, a native speaker from the CBO and research staff co-moderated. Data

collection and informed consent materials were translated from English using front and back

translation with bilingual test. 10 All KIIs were conducted in English at the KI’s office or over the

phone. The first round of KIIs were conducted with leaders of health and social services

organizations serving populations similar to those served by the Options program and

concurrent with when the FGs were being conducted. The second round of KIIs where

conducted with our CBO partners, following completion of the FGs, in order to elicit their

insights from the preliminary FG findings. All FGs and KIIs were audio recorded then transcribed

and translated by an external company, when necessary.

Recruitment. The CBO partners recruited individuals for FGs at H&H facilities and CBO

sites. Participants received refreshments, $20 cash, and a round-trip Metrocard. For KI

recruitment, a database was created that identified individuals knowledgeable about Options,

who represented communities that Options seeks to serve, and/or may deliver health or social

services to these communities. The second round of KIs included senior management of CBO

partners. Key informants were recruited via email and no incentives were provided given that

participation in the KIIs was in their professional capacity as leaders of CBOs serving the

communities of interest.

Analysis. Both FG and KII transcripts were analyzed in Dedoose (v. 7.0.23), a web-

based, mixed-methods analytic application (SocioCultural Research Consultants, Los Angeles,

CA). The data were coded using grounded theory methodology, which allows for inductive

emergence of themes from the data.22,23 Three analysts each initially coded two transcripts and

met to review and revise the initial code list. We proceeded with coding repeating ideas and

writing descriptive and interpretive memos. The code list continued to be revised, resulting in a

refined hierarchical coding structure for thematic analysis and interpretation.23,24 Illustrative

quotations were used to demonstrate the key findings in the Results section. Quantitative

analysis (t and Chi-square tests) of the post-FG survey data was conducted using IBM SPSS

Statistics software (v. 24) to generate descriptive statistics (IBM, Armonk, NY). Specifically, we

carried out univariate analysis to summarize FG participants’ demographic and health-care

utilization characteristics and bivariate analysis to compare participants at the H&H facilities

with those at the CBOs. In this way, qualitative findings from the FGs can be considered in the

context of participants’ characteristics.

Results

Post-focus group survey. A total of 21 FGs (n=144 participants) were conducted between

December 2015 and July 2016 at eight H&H facilities (plus two locations in Staten Island near

two family health centers) and 11 CBO sites across the five boroughs. Participants’ borough of

residence mirrored the sampling frame: Brooklyn, 31.5%; Bronx and Staten Island, 22.4%

each; Queens, 20.3%; and Manhattan, 2.8%. The mean age was 43.7 years (range: 19-82),

56.3% were women, 43.3% were currently married. Among participants, 47.8% identified as

Hispanic or Latino, 38.5% spoke Spanish as their primary language, and 94.3% were born

outside of the U.S. The mean length of residency in the U.S. was 13.2 years. Education was

widely varied, with almost 50% reporting a high school education or higher. Overall incomes

were very low, with 79.5% reporting under $450 per week (Table 1).

Table 1. DEMOGRAPHIC CHARACTERISTICS: H&H-BASED VS. CBO-BASED FGS Total (n=144)

% (n) H&H-based FGs (n=54)

% (n) CBO-based FGs (n=90)

% (n) Age (mean) 43.7 years (SD 13.7) 46.3 years (SD 15.1) 42.2 years (SD 12.6) Gendera Man 43.7 (62) 51.9 (28) 38.6 (34) Woman 56.3 (80) 48.1 (26) 61.4 (54) Marital Status Married 43.3 (61) 50.0 (27) 39.1 (34) Divorced 5.7 (8) 1.9 (1) 8.0 (7) Separated 10.6 (15) 9.3 (5) 11.5 (10) Widowed 5.0 (7) 3.7 (2) 5.7 (5) Co-habiting unmarried couple

8.5 (12) 7.4 (4) 9.2 (8)

Never married 24.8 (35) 25.9 (14) 24.1 (21) Other 2.1 (3) 1.9 (1) 2.3 (2) Borough of residence Manhattan 2.8 (4) 0.0 (0) 4.5 (4) Queens 20.3 (29) 20.4 (11) 20.2 (18) Brooklyn 31.5 (45) 25.9 (14) 34.8 (31) Staten Island 22.4 (32) 24.1 (13) 21.3 (19) Bronx 22.4 (32) 27.8 (15) 19.1 (17) Do not currently live in NYC

0.7 (1) 1.9 (1) 0.0 (0)

Race American Indian or Alaskan Native

4.8 (6) 8.5 (4) 2.6 (2)

Black/African American 9.7 (12) 10.6 (5) 9.1 (7)

Asian 19.4 (24) 19.1 (9) 19.5 (15) Native Hawaiian or other pacific islander

0.8 (1) 2.1 (1) 0.0 (0)

White 12.1 (15) 6.4 (3) 15.6 (12) African 11.3 (14) 6.4 (3) 14.3 (11) Caribbean 16.9 (21) 12.8 (6) 19.5 (15) Other* 29.2 (35) 41.9 (18) 22.1 (17) Ethnicity Hispanic/Latino 47.8 (64) 48.0 (24) 47.6 (40) Hispanic/Latino Ancestry

Puerto Rican 0.7 (1) 0.0 (0) 1.1 (1) Cuban/Cuban-American 2.2 (3) 0.0 (0) 3.4 (3) Dominican/Dominican-American

4.3 (6) 2.0 (1) 5.7 (5)

Mexican/Mexican-American

15.9 (22) 22.0 (11) 12.5 (11)

Central or South American 12.3 (17) 16.0 (8) 10.2 (9) Other Hispanic/Latino 9.4 (13) 6.0 (3) 11.4 (10) Education* Never attended school 4.9 (7) 3.8 (2) 5.6 (5) Elementary school (up to grade 8)

20.4 (29) 13.2 (7) 24.7 (22)

Secondary school (up to grade 11)

19.7 (28) 22.6 (12) 18.0 (16)

High school diploma or GED

20.4 (29) 30.2 (16) 14.6 (13)

Some college or 2-year diploma

13.4 (19) 18.9 (10) 10.1 (9)

College degree (e.g., BA/BS)

16.9 (24) 7.5 (4) 22.5 (20)

Graduate degree (Masters +)

4.2 (6) 3.8 (2) 4.5 (4)

Employment Status Full-Time (≥35 hrs/wk) 10.4 (15) 11.1 (6) 10.0 (9) Part-Time (<35 hrs/wk) 22.2 (32) 20.4 (11) 23.3 (21) Retired 6.3 (9) 9.3 (5) 4.4 (4) Unemployed 46.5 (67) 44.4 (24) 47.8(43) Unable to work 5.6 (8) 11.1 (6) 2.2 (2) Other 9.0 (13) 3.7 (2) 12.2 (11) Primary language spoken at homeb

Spanish 38.5 (55) 40.7 (22) 37.1 (33) Chinese (Cantonese, Mandarin, or Formosan)

7.7 (11) 7.4 (4) 7.9 (7)

Bengali 7.7 (11) 7.4 (4) 7.9 (7) Urdu 2.1 (3) 3.7 (2) 1.1 (1) Hindi 0.7 (1) 1.9 (1) 0.0 (0) Polish 1.4 (2) 1.9 (1) 1.1 (1) Arabic 10.5 (15) 9.3 (5) 11.2 (10) French 6.3 (9) 0.0 (0) 10.1 (9) English 23.1 (33) 27.8 (15) 20.2 (18) Other 2.1 (3) 0.0 (0) 3.4 (3) Country of Birth United States 5.7 (8) 7.5 (4) 4.6 (4)

Other country 94.3 (132) 92.5 (49) 95.4 (83) Length of U.S. residency (mean)***

13.2 years (SD 11.1)

17.7 years (SD 12.9)

10.5 years (SD 8.9)

Number of people in home (mean)

3.9 people (SD 2.1)

3.6 people (SD 2.1)

4.0 people (SD 2.1)

Weekly Household Incomec

<$450/wk 79.5 (97) 75.5 (37) 82.2 (60) $450/wk-$899/wk 14.8 (18) 16.3 (8) 13.7 (10) $900/wk-$1,849/wk 5.7 (7) 8.2 (4) 4.1 (3) Notes aNo responses to: transgender or other categories. bNo responses to: Russian, Haitian Creole, Korean, or Albanian. cNo responses to: $1,850-$2,500/wk or > $2,500/wk. * p< .05 ** p < .01 *** p < .001  

Regarding Options participation, H&H-based FG participants were significantly more

likely to be enrolled compared with the CBO-based FG participants (p<.01). Health & Hospitals

Focus group participants were significantly more likely to have access to primary care, (p<.05)

and specialty care (p<.001), and to have used H&H services in the past three years (p<.001).

Over 90% of participants regarded Options as very important (Table 1).

Possible approaches to outreach, access, and payment. Participants rated 22

possible changes to Options using a four-point Likert scale from high importance to not at all

important. The highest-rated outreach approaches include: providing services and materials in

participants’ primary language, designated staff for billing and health care needs, and

community-based insurance counselors. One participant stated, “The first thing is language.

And then, after, if the doctor takes my insurance.” [FG15] Key access items included having

Options enrollers at the ER, hospitals, clinics, and in the community. One participant

recommended changes to community-based outreach: “…[W]hen you do the meetings here at

the center [a representative] should send in more information because there are a lot of people

and everyone should be here to communicate that so they can take the message to someone

else.”[FG18]

Regarding payment and registration methods, participants were most interested in dual

use of the NYC ID card as a clinic card and obtaining dental services. There was clear dislike for

non-human forms of interaction. Participants disliked using finger prints and eye scans as forms

of checking in for appointments as they feared they could be stolen or used for tracking. One

participant said, “…[W]ith a lot thieves going around, I would not put my fingerprint for

nobody,” [FG05] which was supported by this exchange:

Speaker A: Definitely not, tracking people.

Speaker B: They’re tracking us anyway.

Speaker A: I know but why do you need my eye to [see] the doctors? Why need my

palm print? [FG17]

Focus groups: salient themes. The Options program: knowledge, experience, wants.

Figure 2 depicts the relationship between patients’ awareness, experience, and desires toward

Options. We did not find differences in salient themes raised by FG participants in different

settings (i.e., H&H-based vs. CBO-based). Widespread lack of awareness of Options existed

across FG participants who were likely eligible for the program, while many individuals enrolled

in Options were unaware of their enrollment. Lack of awareness also extended to long-term

H&H patients, as one participant explained:

I’ve been coming here for a long time and this is the first time…I always come

here and I receive the services and then they roll up the amounts….they send

me a letter. And I asked why, with my income, I cannot afford to pay this?

...believe me or not it’s now that I found out about this program. [FG01]

Focus group participants described the reasons they signed up for Options as losing

health insurance, health care unaffordability, onset of health issues, enrollment by H&H staff, or

their misunderstanding of the ACA mandate for health insurance. Discussion of Options’ impact

highlighted themes of affordability, accessibility, and quality. Many participants expressed

positive views, except that the referral process was slow. One participant said, “You don’t have

a lot of money when you live from what you earn. Life is expensive, so it [Options] has helped

us a lot.” [FG20] Another mentioned, “You come here and it’s good, they ask us how we are.”

[FG04] Reasons for not participating included lack of awareness, immigration status, poor

reputation, limited choice of hospital/clinics, and already being insured. One participant stated,

“…sometimes people are afraid because of—I mean like immigration-wise, because I’ve come

across that before.” [FG07] Program improvements included an additional theme of specific

clinical services. Commonly cited suggestions included provision of ambulance service

(affordability), reduced wait times and increased hours (accessibility), and good communication

from providers/site (quality).

Please refer to Figure 2 at the end of this manuscript

Choice and utilization of health care: barriers and facilitators. Barriers and facilitators to

provider choice and health care experience were discussed.† The constructs included 1) patient

experience and identity, 2) care/provider characteristics, and 3) cost. As depicted in Fig. 3, the

specific factors within each of these constructs are located along a continuum of barriers and

facilitators. The factors in the ‘middle’ space were oftentimes spoken about from both

perspectives (e.g., pharmacy access, long waits for prescriptions). The construct of patient

experience and identity contains elements of accessibility (e.g., wait times, translation services)

and quality (e.g., time with provider) and elements of identity (e.g., discrimination, kind

                                                            † These questions asked about health care experiences overall and not just with H&H facilities.

attitude/respect) that resulted in a negative experience influencing future health care decisions

(e.g., lack of trust in system). A question posed by a FG participant is illustrative:

“Is it because of [my] low income I’m being treated this way?... Would you be treating a

patient that had money to pay for it a different way?” [FG16]

Regarding the care/provider characteristics, misalignment of provider and patient

schedules made access a barrier to care. Quality was also frequently discussed. It was noted as

a facilitator when patients felt or heard there was competent continuity of care (reputation).

Finally, related to cost, high cost of services, lack of health insurance, and perception of profit-

seeking among health systems prevented individuals from seeking care. As one participant said,

“It’s become like a business for some of them. There’s no treatment. It’s like, okay, keep

coming so that way you can keep paying co-payments.” [FG05]

Patient Experience

and Identity Care/Provider Characteristics

Cost Related

BARRIERS

FACILITATORS

Wait times Service availability vis-à-vis work and child-care constraints

High cost

Lack of respect Lack of health insurance Discrimination, racism, immigration status, stigma

Experiences causing lack of trust in system

Navigating the system,

getting information

Lack of timeliness Culturally aligned services (eg, language spoken, provider gender)

Lack of continuity of care, access to specialists

Profit-seeking behaviors

Kind attitude/respect Staff incompetence Cost of care Time provider spends with patients

Pharmacy issues Accepts insurance

Lack of geographic proximity

Lack of privacy Competent/quality care Reputation, word-of-mouth Medicaid

Continuity of care Sliding-scale fee system

Translation services Many services at one site Pay after care/services provided

Figure 3. Key constructs influencing choice and utilization of health care providers: a barriers-to-facilitators continuum.

Priority health care needs and services used. Priority health care needs fell into three

categories: access, patient experience, and specific health care services. An intersecting needs

framework represents the multifactorial way in which participants think about health care, as

shown in Figure 4. For example, a holistic perception of health care needs may include

geographic proximity (access), absence of stigma (patient experience), and nutrition specialists

(specific services). When discussing specific health care services, FG participants indicated using

primary care, pediatrics, diagnostic tests, walk-in, in-patient, and translation services, while

needing better emergency, pharmacy, dental, nutrition, and other specialty services.

Figure 4.  Relationship between priority health care needs and services used. 

Key informant interviews. We interviewed 15 key informants (KIs) in two rounds.

Approximately 73% were very familiar with Options. Key informants represented sectors,

including those providing population-specific social and health services, health care providers,

advocacy organizations, trade group representatives, and researchers.

Key informant interviews: salient themes. Health profile of population/community

served. Box 1 presents the community’s health profile, including 1) primary health concerns, 2)

Health Care Services Used - Primary care - Pediatrics - Diagnostic testing - In-patient care - Walk-in clinics - Translation  

 

health provider/facility preferences, 3) the specific concerns of uninsured individuals, and 4)

familiarity or lack thereof of the Options program.

Please refer to Box 1 at the end of this manuscript

Primary health concerns were either medical in nature, social determinant-related and

prevention-related, or access/systems-related. With regard to health provider/facility

preferences, the key issues were separated into medical and non-medical factors. Regarding

medical care, emergency room accessibility was very important. One KI echoed the sentiments

of many FG participants,

I think the word on the street is people enter into the emergency rooms more

often because they believe they will be seen… I think while there are long waits

in the hospital setting, [there’s] assuredness that they will be seen...without the

need of waiting for an appointment. [KII5]

Related to the non-medical care factors, one KI commented:

There’s not a whole lot of attention to primary care… in a very complicated

immigrant life in New York City, that’s not a priority. The priority is getting to

work, not taking time off, earning a living, getting food on the table, staying

away from police. They have different priorities. [KII6]

The concerns of uninsured individuals pertained to their current identity and their past.

A sentiment consistently echoed by FG participants was voiced by this KI:

There’s a fear of government and a fear of, you know, just because of homeland

security and their personal experiences with authority, there is a fear of

disclosing information. And people who are deeply grounded in that, you’re not

gonna reach… they’re too afraid. [KII6]

Key informants noted familiarity with the program was low and felt that those within

their communities who were aware of Options remained hesitant to enroll. As one KI put it, “it’s

so scary and especially if…you’re an undocumented immigrant and you get a bill like that… you

don’t know what they’re going to do with it.” [KII8] The KIs reiterated negative health care-

related experiences of FG participants, including tales of extremely long waits: “One individual

came back and said ‘I went to H&H…I went in at 2 a.m. and I didn’t get out [until] 2 p.m. and I

wasn’t seen until 12 p.m.’” [KII4]

Recommendations for and perception of the Options program. Key informants rated the

same 22 possible changes to Options. Rankings between the two groups were very similar,

which indicated a high priority for language-appropriate outreach activities in trusted

community locations and presence of patient navigators/counselors at the hospitals.

Registration and payment could be facilitated by providing a wide range of modalities. Key

informants similarly marked some ideas as negative or mixed, such as literacy issues, distrust,

and concern about exploitation.

When asked how their constituencies likely perceived Options, KIs described a large,

unfriendly bureaucracy with inadequate language services, long wait times, and a focus on

illness rather than prevention. Many people are unaware of the program and some think it is an

insurance plan. Cost remains a concern. According to one KI,

From their perspective, yeah, they’ll get a sliding scale and they might even be

able to pay that, but there’s still this underlying fear that, ‘They’re gonna get me.

They’re still gonna come back at me with a bill.’ [KII6]

As another KI summed it up, “In the end even what seems to us to be a small fee is daunting.”

[KII8]

Discussion

Findings from this study illuminate health care use, needs, knowledge, and preferences among

low-income, largely uninsured immigrant communities in New York City. As most FG

participants were unaware or had an unclear understanding of Options, these findings provide a

broader understanding of uninsured immigrants’ perspectives about and engagement with

health care services.

Information needs, increasing outreach, and access efforts. Notwithstanding low

awareness of the sliding-scale-fee Options program, there was great interest in it. To address

barriers to participation and to disseminate information about Options, an informational

marketing campaign should be developed. Regarding outreach efforts, the findings indicate a

desire for improved language services, enhanced communications about Options, and

community and hospital-based counselors able to address health needs and Options enrollment.

Integrating these services could result in significant increases in quality of care, program

enrollment, and patient satisfaction.

Programmatic improvements focused on registration and billing could enhance

undocumented immigrants’ experience and trust with the health care system. A strong distrust

for technological methods (e.g., biometric registration and computer payment), fear of

deportation, and desire for staff who speak their language indicates a different approach to

engaging these populations is necessary. These concerns would seem to apply to immigrant

communities’ needs for health care services irrespective of their specific setting.

Key health care issues. Participants’ identified health care needs and services beyond

medical care. Among FG participants, health included improving access and the patient

experience. Access recommendations include child care, language services, and co-located

services. Regarding patient experience, improvements should be focused on respectful,

culturally appropriate care, shorter waits, and absence of stigma. These sentiments were

supported by KIs, who also emphasized other non-medical care factors such as diverse

personnel and affordability. Affordability was the first and most frequently cited factor

influencing service utilization and provider choice among FG participants. Moreover, participants

noted settling payment after care and limited profit-seeking behaviors as significant factors in

provider choice.

Intersecting health needs framework. Consistently, four themes emerged across

the topics of health care needs, provider and facility decisions, and Options program impact.

They are 1) accessibility, with an emphasis on the characteristics and services of the health care

setting, 2) patient experience, focusing on interpersonal treatment and quality of care, 3) cost

or affordability, with a desire to access programs like Options without fear of consequences,

and 4) a wide range of medical and preventive health services, beyond those currently used.

These factors intersect to constitute a nuanced understanding of health needs. Notably, many

statements did not emphasize the kind of health services but rather the conditions under which

they were provided. Again, it would seem that these concerns might pertain to immigrants’

health care needs and sensibilities beyond the H&H Options program population.

Strengths and limitations. Strengths and limitations of this study should be

considered. Although our KIs represented a wide range of stakeholders, it is impossible to

capture all perspectives and therefore some issues may have been missed. However, as a

substantial thematic overlap existed between the KII and FG findings, we have greater

confidence in the validity of the findings. The purposive, community-engaged sampling

approach involved partnerships with on-the-ground service providers familiar with the target

groups. This resulted in FGs participants from all five boroughs, FGs conducted in six languages,

and an approximately even split of Options participants and non-participants and H&H facilities

and CBO-settings. It is possible that CBO-based FG participants may be more connected to

social services and H&H-based FG participants are receiving health care services. However, it is

also possible that H&H-based participants were there due to lack of preventive health care and

participants recruited at the CBOs may have had limited knowledge of the H&H facilities

available to them—in which case, the potential group-specific biases may cancel each other out.

The post-FG data suggests social desirability bias among Options participants in the

H&H-based FGs, as significantly more reported greater satisfaction with the program compared

with those in the CBO-based FGs (p<.05). Initially, comments regarding Options were favorable

and somewhat superficial among H&H-based FG participants. However, after increased

assurances of confidentiality, some participants discussed areas for improvement. By identifying

this bias we were able to take it into account when analyzing the FG data by setting. As the

research examined health system utilization generally (i.e., not H&H specific), similar rates of

utilization could be expected. However, as shown in Table 2, CBO-based FG participants

reported significantly lower utilization of primary care (p<.05) and specialty care (p<.001) and

higher reports of no health care utilization (p<.05), and were significantly less likely (p<.01) to

be participating in Options. Therefore, it is likely that the higher rates of Options participation

among H&H-based FG participants is associated with greater access to and utilization of health

care services.

Table 2. HEALTH CARE AND H&H OPTIONS-RELATED VARIABLES OF FOCUS GROUP PARTICIPANTS Total (n=144)

% (n) H&H-based FGs (n=54) % (n)

CBO-based FGs (n=90) % (n)

Health Care Services Utilizeda

Primary Care* 59.9 (85) 71.7 (38) 52.8 (47) Emergency Care 50.7 (72) 60.4 (32) 44.9 (40) Mental Health Care 12.0 (17) 15.1 (8) 10.1 (9) Specialist Care*** 29.6 (42) 49.1 (26) 18.0 (16) Dental Care 29.6 (42) 28.3 (15) 30.3 (27) Other Services 11.3 (16) 9.4 (5) 12.4 (11) None* 17.5 (24) 6.3 (3) 23.6 (21) Options Participant** Yes 43.6 (61) 60.4 (32) 33.3 (29) No 55.0 (77) 39.6 (21) 64.4 (56) Don’t Know 1.4 (2) 0.0 (0) 2.3 (2) Options Importance Very Important 95.1 (58) 100.0 (32) 89.7 (26) Somewhat Important 3.3 (2) 0.0 (0) 6.9 (2) Not at all Important 1.6 (1) 0.0 (0) 3.4 (1) Options Satisfaction* Very Satisfied 63.3 (38) 78.1 (25) 46.4 (13) Somewhat Satisfied 35.0 (21) 21.9 (7) 50.0 (14) Not at all Satisfied 1.7 (1) 0.0 (0) 3.6 (1) H&H Use in Last 3 Yrs***

Yes 41.0 (57) 72.0 (36) 23.6 (21) No 46.8 (65) 26.0 (13) 58.4 (52) Don’t Know 12.2 (17) 2.0 (1) 18.0 (16) Notes aWhile the survey question was specifically related to “H&H Services Used” the participants experience in the focus group and answers to our request to specify in which facilities they received care lead the researcher to believe the responses were to the more broad question “Health Care Services Utilized” and not particular to the H&H system. * p< .05 ** p < .01 *** p < .001 Ultimately, the greatest strength was the dedicated engagement of our partner CBOs,

from valuable input on development of the data collection instruments, implementation of the

sampling design through recruitment and co-moderation of the FGs (data collection), to

thoughtful feedback on the preliminary findings.

Conclusions and recommendations. For health systems and providers serving

diverse populations, additional efforts may be required if the goal is indeed to serve a diverse

patient population. A multi-modal approach is needed to increase outreach, access, and

participation as, to paraphrase a KI, different groups respond to different things. A clear a

sense of necessity of the Options program existed, and there was great desire to communicate

potential improvements to H&H staff. Thus, establishment of an effective mode of

communication by which Options (or similar discounted fee-for-service program) participants

can engage with hospital management about barriers and facilitators to program usage and

improvements could improve trust and reputation, increase efficiencies (e.g., better program

recruitment and streamlined utilization of services), and, importantly, lead to improved patient

health.

Regarding Options programmatic changes, clear support existed for better language

services and community-based outreach, as well as strong opposition to non-human, biometric

registration and payment methods. Critically, many of the suggestions provided were driven by

frequent negative patient experiences that participants felt were tied to their immigrant

identities which is not specific to Options participants or NYC.26-28 To address this, we

recommend a few approaches. First, cultural humility training should be required among all

health system staff, and should address multiple types of diversity, including socioeconomic

status. Health systems and patients may also benefit from creating mechanisms by which

anonymous reporting can occur to document perceived discrimination without consequence

(e.g., reporting cases to an appointed representative from the community). These efforts

should be coupled with a behavioral change campaign to create a culture of zero tolerance

towards discrimination among providers, visible to both patients and practitioners. For example,

this campaign may be informed by other health systems-based behavior change programs such

as hand washing campaigns.25 Finally, a long-term recommendation is to create or make explicit

existing efforts to recruit and retain diverse staff. As federal and state funding changes,

pressure to create efficiencies may grow. This offers a unique opportunity for health systems to

more authentically engage the populations they serve to ascertain and address population-

specific barriers and facilitators to health care engagement and utilization.

Acknowledgments

We would like to acknowledge the contributions and partnership of several individuals and

organizations in this project. Our colleagues at NYC Health & Hospitals, in particular Kathleen

Whyte and Yvonne Cummings, were very helpful guides in navigating a large and complex

system. Our CBO partners made the project a reality with their dedication to this work and,

more importantly, the communities they serve. We specifically thank Noilyn Abesamis-Mendoza

and Patti Dayleg (Coalition for Asian American Children and Families), Maha Attieh (Arab

American Family Support Center), Rev. Karen Jackson (Project Hospitality), Debra Lesane

(Caribbean Women’s Health Association), Becca Telzak (Make the Road New York), John Weed

and Daichun Tang (Bronx Works), Claudia Calhoon (New York Immigration Coalition), and

Laura Redman (New York Lawyers for the Public Interest). Implementation of this extensive

citywide data-collection undertaking was very successful thanks to the valuable support of our

research assistants, Anne McGroarty and Danielle Rivera, analytic/coding assistance from

Monica Gagnon, MPH, and support with manuscript preparation from Madeline Duffy, MPH. Last

but not least, this work would not be possible were it not for the generosity of the focus group

participants who shared their health experiences with us, the key informants who serve many

vulnerable groups and provided us with their invaluable knowledge, and the support of the

United Hospital Fund to carry out this important work. We hope that it will inform concrete

steps to improving the health of uninsured and underserved New Yorkers and provide guidance

for health care systems elsewhere.

Statement on Conflicts of Interest

The authors attest there are no conflicts of interest in the publication of this research.

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Box 1. KEY INFORMANT INTERVIEWS:  POPULATION/COMMUNITY SERVED “PROFILE” 

1) Primary Health Concerns - Medical: chronic illnesses, STDs, mental health, obesity, nutrition, infectious disease, dental care, vision care, family planning - Social determinants/Prevention: health education, preventive care, screenings, language services, smoking cessation, exercise - Access/System: affordable care, access to insurance, navigation of the system, distrust of the system 2) Health Provider/Facility Preferences

- Related to medical care: reputation/word-of-mouth important; different cultural groups may prefer different hospitals; emergency room may seem more accessible yet some prefer private doctor; hospitals may be viewed as ‘one-stop shop’

- Related to something other than medical care: Type of facility matters less than language services, affordability, shorter wait times, feeling welcomed, expanded hours, diverse personnel, provider continuity

3) Uninsured Health Concerns - Identity: stigma, cultural insensitivity, fear of the system - Experience: limited options for care, preventive health care, unexpected high bills, wait times 4) Familiarity with H&H Options - Most don’t know about it (including actual participants): need better outreach, information - If know about it: still fear hidden costs, deportation

 

Figure 2. Participants’ knowledge, experience, and wants of the H&H Options Program.

Knew about Options Program?

No Yes

Why participate in Options? - Lost insurance - Couldn’t afford insurance - Developed health issue - Invited by H&H staff ------------------------------- - ACA mandate

Why don’t participate in Options? - Unaware of program - Immigration status - Poor reputation of public services - Fewer hospital/clinic choices - Have insurance

Wants from Options Program? I. Affordability - Options fees lower than current - Ambulance service II. Accessibility - More staff - Increased hours - Reduced wait times - More services - Transportation to appointments - Unlimited doctor visits - Increase community knowledge of Options - More facilities geographically accessible III. Quality services - Quality and timely care - Equal quality treatment - Good communication from provider/site IV. Specific services Vision care, surgery, dental, preventive care, substance abuse treatment, medication coverage, urgent care, mental health care, pediatrics, nutritionist, in-patient care, emergency, physical therapy/rehab, dermatology, diagnostic testing

Effect/Impact of Options Program? I. Affordability - Can afford medications - Health care is more affordable - Can afford dental care II. Accessibility - Now can access preventive care - Don't worry about immigration status - Could get needed surgery - Can access health care - One-stop-shop III. Quality - Treated like a human being - Good quality care - Slow referral process