Avon Foundation Annual Report by wanghonghx


									Sinai Urban Health Institute’s
Annual Progress Report 2008-2009
to the Avon Foundation
Grant ID #05-2007-004
April 2009

Sinai Urban Health Institute
Sinai Health System
1500 S. California Ave. K-437
Chicago, IL 60608

Steve Whitman, PhD, Principal Investigator, 773-257-5661, whist@sinai.org
Ami M. Shah, MPH, Project Director, 773-257-6569, shaam@sinai.org

Other Contributors:
DeShuna Dickens, MPH, AE-C Breast Health Supervisor and North Lawndale Sector Coordinator
Regina Flowers, Community Health Educator, North Lawndale
Teena Francois, MPH, Breast Health Supervisor and West Humboldt Park Sector Coordinator
Ana-Rosa Garcia, Community Health Educator, East Humboldt Park
Pauline McCaskill, Hotline Coordinator and Research Assistant
Wanda Rodriguez, Community Health Educator, East Humboldt Park
Gloria Seals, Breast Health Supervisor and North Lawndale Sector Coordinator
Celevia Taylor, Community Health Educator, West Humboldt Park
Giselle Vasquez, MPH, Breast Health Supervisor and East Humboldt Park Sector Coordinator
                                                      Avon Foundation Annual Progress Report 2008-2009

With generous support from the Avon Foundation, the Sinai Urban Health Institute (SUHI) has
helped organize, energize and galvanize the city of Chicago to address widening disparities in
Black-White breast cancer mortality. Following the dissemination of a landmark report in
October 2007, Eliminating Breast Cancer Disparities in Chicago, SUHI proposed to develop an
innovative and evidence based community-driven intervention targeting two minority
communities in Chicago. This report reflects the second year of this initiative. The goal is to
establish an effective model for Community Navigation that will improve breast health screening
practices that could be replicated in other communities in Chicago and beyond. Our program
focuses on getting all women in our target areas screened for breast cancer routinely and then
ensuring that all needed follow-up services are received.

One distinguishing factor between Community Navigation and the current paradigm of
navigation services, or Inreach Navigation, is the point at which women are contacted.
Community Navigation reaches women where they live their lives, from any medical or non-
medical setting, and navigates them to the medical system and then through treatment if
necessary. Inreach Navigation also traditionally reaches women at the medical facility. There
are many existing programs focused on Inreach navigation (e.g., Sinai’s Navigation Project,
supported by an Avon Safety Grant, and the Harold Freeman Model in New York City).
However, the community navigation program that we are building is different from more
traditional outreach programs for mammography in that we work with women from
mammography through resolution of abnormal findings and then through treatment if that is
necessary. Many women have told us of the failures of many programs that end when the
referral for a mammogram is given. Our program is meant to encompass all aspects in the
continuum of the pursuit of breast health.

In Chicago, it has been established that there is a lack of optimal breast health care for minority
and uninsured women, resulting in high rates of breast cancer mortality for black women. To
eliminate this gap in access, SUHI conceived of and created “Helping Her Live/ Apoyandala A
Vivir: Gaining Control of Breast Cancer/ Tomando Control Sobre El Cancer Del Seno” for two
Chicago communities, Humboldt Park (HP) and North Lawndale (NL). Helping Her Live

                                                      Avon Foundation Annual Progress Report 2008-2009

(HHL) is a comprehensive, community-based breast cancer outreach intervention designed to
improve screening rates, reduce delays in diagnoses and treatment, and ultimately eliminate
widening disparities in breast cancer mortality through education, awareness and access to care.

During the past year, we have accomplished a great deal to lay the foundation for our work.
For one, we completed a baseline assessment with 2,000 women (in June 2008) and gained
invaluable information on mammography history, knowledge of health beliefs and myths, and
where and how women in our target communities access breast health care. Even more
impressive is that we received HIPAA permission from over 80% of these women to examine
their medical records and assess concordance of self-reported mammography. Information from
the baseline assessment led to the development of the HHL educational curricula and
intervention activities. More specifically, to launch this intervention, between July-September
2008, we developed key messages for the community, created a comprehensive HHL Resource
Guide to help us navigate women effectively, established a Hotline, produced all of our
presentation materials and trained five new staff to educate the community and navigate women
to medical services. In October 2008, we conducted our first community workshop and rolled
out the HHL intervention by building on existing partnerships and engaging key stakeholders.
Since then, we have reached over 4,300 women though our workshops and community events
and assisted over 100 women in obtaining a mammogram. Most importantly, we are evaluating
our efforts, unveiling barriers to optimal services at the community and institutional level, and
making improvements to the intervention along the way. These are just a few highlights of our
accomplishments detailed in this Progress Report for YR02 (April 2008 through March 2009)
activities of Avon Grant ID #05-2007-004.

We present our work in this report in the following manner:

                                                    Avon Foundation Annual Progress Report 2008-2009
                                                                                            Section 1


As we discuss throughout the report, the work of HHL is conceived of taking place in four
“sectors” simultaneously: North Lawndale (which is mostly African American); the east part of
Humboldt Park (Mexican and Puerto Rican); and the west part of Humboldt Park (African
American). To work effectively in these communities, the HHL team is comprised of 13 diverse
and dynamic staff members. The Avon Foundation supports 10 of them, including 3 FT Project
Coordinators, 4 FT Community Health Educators (CHEs), 1 FT Research Assistant (RA), 1 FT
bilingual Administrative Assistant and 1 FT Project Director. The other three are in-kind.
Appendix A presents the project Organizational Chart.

During the past year, we experienced some turnover and replaced 1.5 FT bilingual Sector
Coordinators with 1 FTE for East Humboldt Park. Our Sector Coordinators now include
DeShuna Dickens (0.75 FTE) and Gloria Seals (0.25 FTE) for North Lawndale, Teena Francois
(1 FTE) for West Humboldt Park and Giselle Vasquez (1 FTE) for East Humboldt Park.

We also hired three new CHEs and an RA. Regina Flowers, our North Lawndale CHE had
already been on board. From the pool of interviewers who worked with us on the baseline
assessment last year, we hired Celevia Taylor (who is a resident of West Humboldt Park) and
Wanda Rodriguez (who is from the East Humboldt Park Puerto Rican community) as CHEs.
Pauline McCaskill, another former interviewer, was also hired as a full-time RA. All three of
them joined our team as fulltime staff in July 2008. To complete the team, in December 2008, a
bilingual CHE (Ana-Rosa Garcia) joined the East Humboldt Park team to reach out to the
Mexican community.

In addition to the full-time HHL team, we continue to benefit from and work closely with the
expertise of and experience of other SUHI and Sinai staff, including the Sinai Community
Institute and Sinai Avon Safety Net Navigation Project (2005). Specifically, the Sinai
Navigation Project Data Analyst (Kristi Allgood) was instrumental in survey data management,
cleaning and analyses and continues to be an asset to the project. The Sinai Navigators (Diana
Salgado, Monique Mitts and Suzy Gil) likewise are invaluable in assisting us with women who

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need diagnostic services at Sinai. Senior advisor and professor from the University of Illinois at
Chicago - School of Public Health, Dr. Garth Rauscher, has also been essential to guiding the
baseline survey data analyses, improving the medical abstraction procedures and evaluating the
overall program.

Lastly, we are working collaboratively with several community based organizations (CBOs),
including the Puerto Rican Cultural Center, Centro Sin Fronteras, the West Humboldt Park
Development Council and the Sinai Community Institute. While we have formal agreements
with these CBOs, there are many other businesses, governmental agencies and agencies that have
emerged as important stakeholders and community assets, with whom we are partnering. Our
relationships with community leaders and residents have also been most powerful and beneficial.
Their informal feedback and comments on our intervention has guided our work and we will
continue to welcome their valuable perspective and involvement. The community in its entirety
has been a tremendous wealth of knowledge and guidance to our work. We also continue to
build upon our existing relationships and benefit from other breast health outreach work to
ensure the success, replicability and sustainability of our efforts.

                                                     Avon Foundation Annual Progress Report 2008-2009
                                                                                             Section 2


In last year’s Narrative Report, we proposed to complete three formal assessments: a baseline
survey with 2,000 women, 8 focus groups and an institutional survey of facilities in our target
areas. In this Section, we provide an update of our work in these areas in preparation for the
development of the planned intervention. We present the methods we employed to complete the
baseline survey and some of our key findings. We also describe how and why we changed our
plans for the other assessments and new initiatives that have since been initiated.

Baseline Survey
The purpose of the baseline survey was to inform our intervention planning, obtain community
level mammography prevalence rates and examine accuracy of self-reported mammography. To
do this, we interviewed over 2,000 women age 40 years and over in East and West Humboldt
Park and in North Lawndale. Based on the racial and ethnic populations of these two
communities, we targeted 500 women from each of the following Sectors: African American
women in North Lawndale (NL); African American women in West Humboldt Park (WHP);
Puerto Rican women in East Humboldt Park (EHP) and Mexican American women in EHP.

The survey instrument was designed to gather relevant information about women’s experiences
in accessing mammography, their mammography history, and attitudes and knowledge about
breast health that would help shape the intervention. More specifically, the purpose of the
survey was to: (1) generate a baseline mammography screening estimate for the four targeted
sectors; (2) examine the extent to which self-report and medical documents (charts, electronic
data, etc.) are in agreement; and (3) gain specific information that will help shape and guide the
planning of the intervention. Whenever it was possible we used exact wording of questions
found on national and state surveys.

We hired and trained 13 hourly interviewers (6 Spanish speaking) from the communities to
administer the survey (greater details on these procedures were described in last year’s narrative
report). They were effective not only in administering the survey to over 2,000 women in just

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four months but also in identifying new venues for data collection and most importantly in
earning the trust of women who then gave us permission to access their medical records. We
could not have been successful without them.

A venue-based sampling method was employed to find eligible women from the community with
hopes of getting women from all walks of life. Sector Coordinators were responsible for
identifying venues and scheduling times/dates for the interviewers to administer the surveys.
Between March-June 2008, we screened 3,197 women and interviewed 2,200 women age 40
years and older living in the HP and NL area. Among them, 1,779 (81%) women signed a
HIPAA Authorization Form giving us permission to access their medical records at specific
facilities to confirm their mammography histories. All respondents received a $20 gift card from
various local businesses, such as Walgreens, Walmart or CVS.

Contacting key stakeholders and reaching out to existing partnerships was the most productive
strategy to identify venues for data collection. Each Sector had different experiences in
completing the data collection for the baseline survey, as detailed in the Sector Methodology
Reports in Appendix B. Each Sector also learned a great deal from this process about the
communities that we will be serving. For instance, the NL Sector Coordinators, DeShuna
Dickens and Gloria Seals, learned that many women who attended churches in NL did not
necessarily live there. Similarly, the WHP Sector Coordinator (Teena Francois) learned that the
WHP community was predominately residential with few businesses and that they needed to be
more creative in identifying appropriate and safe spaces for data collection. Safety emerged as
an important consideration when planning data collection in both WHP and NL and often
determined which venues were selected for data collection and the time of day surveys could be

The Sector Coordinators also learned that success at a particular venue often depended on the
venue or store manager and whether there were appropriate announcements made to women.
For instance, the EHP team circulated a flier at an adult-learning school to make sure that
Mexican women knew that the survey was being administered on campus. A similar procedure
was employed at a WHP Senior Facility, where residents did not ordinarily come out of their

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rooms, making the posting of fliers more effective. In general, for most public spaces, we tried
not to put out fliers prior to the survey so as not to bias our sample. However, in some instances,
it was necessary. None of the fliers advertised the $20 gift card incentive.

To ensure variability in participant-type, we agreed not to complete more than 25% of our total
surveys per Sector at any given venue-type. There were a total of twelve different venue-types
(Table 1) and each Sector was successful in different ways. For instance, the majority of women
in NL were interviewed at local businesses (e.g., Walgreens and CVS), senior facilities and
laundromats; in WHP, interviews were done at Community Based Organizations (CBOs), block
clubs and local businesses; and in EHP, Latina women overall were interviewed at many CBOs
and grocery stores, yet Mexican women were more likely found at the churches and school
parent-teacher meetings and Puerto Rican women at the senior facilities. Figure 1-2 maps the
distribution of venues and survey respondent’s home residences. It illustrates the tremendous
reach and spread we achieved in surveying each community.

Table 1. Percent of Completed Surveys by Venue Type and Sector
                                   TOTAL            NL-B            HP-B           HP-MX            HP-PR
                                   N=2200*          N=483           N=471          N=419            N=536
 Park District                       6%               9%              1%             6%               6%
 Community Based Orgs               14%               6%             23%            12%              13%
 Laundromat                          8%              13%             11%             7%               6%
 Church                              8%               3%              6%            17%               5%
 Senior Facility                    13%              15%             11%             6%              19%
 Beauty/Nail Salon                   1%               3%               --             --               --
 Governmental Agency                 1%                --             1%             2%               3%
 Grocery Stores                     14%              10%              6%            23%              19%
 Health Care Facility               14%               3%             10%             7%              13%
 Businesses                         11%              18%             14%            3%               8%
 Block Club                          3%                --            14%              --              1%
 Other (mostly school PTA mtgs)      7%                --             3%            16%               7%
   * Note: We completed 2,200 surveys but some women (n=291) did not fall into our target communities or did
   not fall into one of the racial/ethnic groups of interest and were excluded in the above table.

Data collection overall was a dynamic and ongoing process. Sector Coordinators accomplished
our goal of completing 2,000 surveys by mid-June and they are grateful for the new partnerships
and relationships that they built. Note that in the upcoming year, we plan to finalize a Baseline
Survey Report which will also examine how representative our venue based sample is to the
community’s sociodemographic data from the Census.

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                                                                                                                                     Section 2

                                           Figure 1-2. Distribution of Venues and Women Surveyed

             Figure 1. East and West Humboldt Park                                         Figure 2. North Lawndale

                                                                                                              Congress Pkwy



                Kinzie                                                                                               Cermak

  Legend for East (EHP) and West Humboldt Park (WHP)                               Legend for North Lawndale (NL) Map

             Survey Venues, N = 100 (64 EHP, 36 WHP)                                      Survey Venues, N = 26

             Black Survey Respondents                                                     Black Survey Respondents
              Mexican Survey Respondents

              Puerto Rican Survey Respondents

                                                     Avon Foundation Annual Progress Report 2008-2009
                                                                                             Section 2

Survey Results
Because our initial planning involved targeting women of specific racial/ethnic groups, our data
findings focus on the Sectors as described above: the African American population in NL (NL-B,
N=483), the African American population in WHP (HP-B, N=471), the Mexican population in
Humboldt Park (HP-MX, N=419) and the Puerto Rican population in Humboldt Park (HP-PR,
N=536). The total sample for the Sectors equals 1,909 and is the final sample size (N) for all the
data tables in this report (Table 2).

Table 2. Total Sample Size, Interviewed 2,200 Women Total in 2 Chicago Communities
                                                  No. of Women
 North Lawndale - Non-Hispanic Black (NL-B)            483
 Humboldt Park - Non-Hispanic Black (HP-B)             471                   N=1,909, Women in a
 Humboldt Park - Mexican (HP-MX)                       419                   Designated HHL Sector
 Humboldt Park - Puerto Rican (HP-PR)                  536
 North Lawndale (non-Black)                             10
 Humboldt Park (other Hispanic/Latina)                  90
 Humboldt Park (other Non-Hispanic)                     41
 HP- Non-Hispanic Race Unknown                           6
 Other Community Areas (CAs)                            144
               Total Surveys Completed                 2200

In the following pages, we present key findings from the survey and summarize what this
information taught us about our target communities and how we should guide our future

Our sample demographics suggest that we had an even spread of women (Table 3). Roughly
40% of women were between ages 40-49 yrs. There were greater proportions of African
American women in NL and Puerto Rican women in HP who were older, consistent with the fact
that we had more senior facilities where we interviewed in these areas. Most women (74-89%)
were single, except among Mexican American women (44%, p<0.0001). Two-thirds of African
American women were high school graduates compared to less than half of Hispanic women
(p<0.0001). Between 50-59% of all women reported that they made less than $10,000 a year in
all of the Sectors and the majority was living below poverty ranging from 68% among African
Americans in NL and HP to 85% of Mexican Americans in HP.

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                                                                                                   Section 2

Table 3. Demographics and Other Respondent Characteristics by Sector
                                     NL-B           HP-B          HP-MX          HP-PR
 Age†      % 40-49 Yrs                35             45             45            33
           % 50-59 Yrs                28             31             28            31
           % 60-69 Yrs                21             15             17            21
           % 70 + Yrs                 15              9              9            15
  Marital Status†, % Single           87             89             44            74
  High School Graduates†, %           64             66             36            47
  Income⊥ < $10,000                   50             53             60            58
             $10,000-19,999           25             22             24            21
             $20,000-34,999           13             14             10            15
              >= $35,000              12             11              6             7
  Below Poverty†, %                   68             70             85            75
  p < 0.0001, ⊥ p=0.003

        a. Disease Burden
To determine the prevalence of a health outcome, we also asked women whether they had ever
been diagnosed with a particular health condition. Roughly 3/4 of all women in the 3 Sectors
were diagnosed with at least one co-morbidity and about 2/3 among Mexican American women
in HP (p<0.0001). More specifically between 23 and 32% of African American and Puerto
Rican women, respectively, reported that they had three or more co-morbidities, whereas 37% of
Mexican women in HP had no co-morbidities (Table 4).

Table 4. Percent of Women Ever Diagnosed with the Following Health Conditions
 Health Condition                 NL-B         HP-B        HP-MX         HP-PR
 High Blood Pressure               61           58           36           51
 Diabetes                          22           21           24           31
 Heart Disease                     14           13            6           13
 Asthma                            25           27           12           34
 Arthritis                         46           40           32           48
 Osteoporosis                       5            6           12           14
 Emphysema                         3            3             2            2
 Cancer                             9            6            3            5
Note: Data presented in the table only reflect percentages for the 1,912 women from each Sector.
There were 128 out of 2200 (6%) women who reported that they had ever been diagnosed with cancer. Among them,
38 were diagnosed with breast cancer and 27 with cervical cancer.

We also asked women to rate their overall health status. We asked, “In general, would you rate
your health excellent, very good, good, fair or poor?” Mexican and Puerto Rican women in HP
(60%) were more likely to report fair/poor health compared to their African American

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counterparts in HP (39%) and African Americans in NL (42%). All four HHL Sectors reported
worse self-rated health than the overall U.S. average -- offering some insight into the health
status and disease burden among the women we interviewed in these communities.

        b.   Access to Care
Women were asked about their access to routine health care services and whether they had been
diagnosed with a health condition. Table 5 lists the proportion of women who reported that they
received various routine health services. The majority of women (>60%) in all sectors reported
that they had received preventive services (with the exception of the flu shot) in the last year.
Also noteworthy, though our project does not emphasize this as a screening tool, between 66-
72% of women (age 40 yrs and older) reported that they had a clinical breast exam in the last
year. Overall, about 90% of women in all sectors reported that they had two or more preventive
services in the last year.

Table 5. Percent of Women Who Received the Following Routine Health Services in the Last Year
                                 NL-B         HP-B          HP-MX         HP-PR
 Blood Pressure Check             94           95             89           92
 Blood Sugar Check                80           75             81           84
 Received Pap in Last Yr          64           61             64           63
 Cholesterol Check                77           74             82           84
 Clinical Breast Exam             72           67             66           72
 Received a Flu Shot              44           34             40           51

Access to these preventive services could be a proxy for primary care and offer insight as to
whether women are receiving routine care (since we ask whether they received these services in
the last year). From these data, it appears that most women had access to routine health care in
the last year (see Table 6).
Table 6. Percent of Women who are Insured and have Access to Primary Care Services
                                      NL-B           HP-B           HP-MX         HP-PR
Health Insurance
        None                            19            28             51             23
        Public, no private              60            50             26             54
        Private                         21            22             23             23
Usual Source of Care†
        No place                        6             5              7              4
        ER                              1             7              4              5
        Other Place                     94            88             89             91

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                                                                                             Section 2

     c. Mammography Utilizations
About 65% of all women interviewed reported that they had had a mammogram in the last 2
years. This ranged by Sector from 59% among African Americans in Humboldt Park to 70% of
Puerto Ricans in Humboldt Park (Table 7). These proportions are lower than national surveys
which suggest that about 80% of women self-report mammograms in the past 2 years. Much
lower proportions were reported by women for having had three mammograms in past 3 years.

Table 7 – Prevalence of Mammography Utilization
                                   NL-B         HP-B         HP-MX        HP-PR
                                  N=478        N=460         N=414        N=528
Mammogram Use, Past 2 Yrs (%)*       67          59            65          70
3 Mammograms in Past 3 Yrs (%)       40          32            29          36
Never Had a Mammogram **             14          19            21          12
  p<0.01; ** p<0.001

In general, we also found significant differences among women who never had a mammogram.
Mexican and African American women in HP were more likely to report that they had never had
a mammogram (p=0.0004) compared to the other two Sectors. These women also tended to be
younger (in their 40s, p<0.0001) and more likely to have two or more children at home

We also examined several factors that may predict routine mammography utilization. Women
were more likely to report having had a mammogram in the last 2 yrs if they were insured (by
either public or private coverage), had a usual place of care, had a regular provider and had
recent check ups. At the same time, women who reported a greater number of co-morbidities
were also more likely to have had a mammogram in the last 2 years. In other words, women
linked into the health care system appear to receive their mammograms routinely, as we might
have suspected.

To guide our work, we also asked women where they received their health information. Over
80% of women in all the Sectors reported that they received health information from a health
care professional, as opposed to family members, friends, CBOs or religious organizations. In
addition, we asked women whether they had heard of several low-cost or free mammography
programs. Among women that were at or below twice the federally qualified-defined poverty

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                                                                                              Section 2

level and who also lacked insurance, nearly half (44%, n=451) reported having heard about a
free program for mammography. Only 25% of these women were able to name a program or
named a facility where they had heard there was a free program available and far fewer (9%)
reported being enrolled in one of these programs, despite their eligibility.

Focus Groups
Though a protocol was put in place for this assessment and approved by IRB, we decided not to
conduct formal focus groups to understand women’s experiences in accessing mammography
and/or barriers to care. Our core team believed that there was ample qualitative information
available about minorities with low mammography screening rates from existing literature, some
of which was produced by some of our fellow colleagues at the University of Illinois at Chicago
and University of Chicago and from the Town Hall meetings conducted by the Metropolitan
Chicago Breast Cancer Task Force. We had learned a great deal over the last year in preparing
for this project and decided instead to invite women from the community to provide feedback on
our project materials and workshops.

In place of the focus groups in this planning phase, we invited community residents and those
who volunteered to participate in focus group discussions to listen to and provide feedback on
our HHL Educational Workshop. With community feedback, we were able to better tailor the
intervention, give our educators an opportunity to practice their presentation and receive
invaluable community feedback to re-shape the presentation as needed. A description of this is
available in Section 3, Developing HHL.

Institutional Assessment
The institutional assessment was originally proposed to better understand how breast cancer
screening services were funded and delivered to women in our two Chicago communities for the
development of our HHL Resource Guide. We wanted to understand how women received care
so that we could better utilize existing resources and navigate them appropriately. However,
once again, because of the richness of our staff knowledge and expertise of many of our contacts
(particularly from the Metropolitan Chicago Breast Cancer Task Force), we were successful in
developing the HHL Resource Guide (for navigating women to services) by tapping into existing

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resources. Teena Francois and Pauline McCaskill took the lead in developing this guide, which
is used to direct women to various breast health and social services. For these reasons, we
decided not to conduct a formal institutional assessment. Additional details about the Resource
Guide are available in Section 3.

Despite not having a formal relationship with some health care providers, HHL Coordinators
have reached out to numerous primary care doctors, mammography centers and hospitals in their
Sectors during the past year. We share the HHL program with medical facilities by leaving our
fliers and brochures for their clients and making HHL workshop presentations in their waiting
rooms. In this process, we have learned about the health services that are available to women in
HP and NL, they type of mammograms offered and where/how they refer or send out
mammography results (also relevant to our medical abstraction work). We often share our
experiences to assist others. For instance, EHP Sector Coordinators have built an important
relationship with the CEO of Norwegian American Hospital (NAH), which serves the Puerto
Rican and Mexican American populations of HP. During the past year, our team not only made
presentations to NAH staff and their patients, but have also helped NAH write new grants
seeking to employ outreach educators who would promote the HHL program in HP. This is one
example of how the community values our work and sees it as filling a gap to complement their
existing services. This, by the way, will help sustain this project. Thus, rather than conducting a
formal institutional assessment, we continue learning how breast cancer screening and treatment
is offered to women in our target communities informally, through dialogue and mutual
understanding of a shared interest in improving the delivery of breast health services to women
and ultimately eliminating disparities in breast cancer mortality. We will continue to reach out
to health care facilities as we do our Outreach Navigation and learn how our outreach efforts can
tie in with Inreach.

Medical Abstractions
As described in our earlier report, literature suggests that self-reported mammography rates (both
on the phone and in person) may be problematic because poor women (including Black women)
tend to over-report mammography. The extent of such over-reporting is unknown and may
contribute to our lack of understanding of the widening disparities in breast cancer mortality.

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                                                                                             Section 2

For instance, if all women are getting screened based on self-reported mammography rates in
Humboldt Park and North Lawndale, why are so many women dying? Inaccuracy of self-
reported screening mammography is not fully understood in our two communities and we are
thus examining how well self-reported mammography history (from the baseline survey)
matches medical records.

Giselle Vasquez, the EHP Sector Coordinator, is leading the HHL team in this endeavor. Of the
2,200 women interviewed, a remarkably high 81% (1,779 women) signed the HIPAA Form
giving us permission to access their medical records and review their breast health history. We
had estimated that this proportion would be about 50% and were surprised and delighted by the
trust in HHL shown by so many women. They informed us of the name/s of the hospitals or
mammography facilities where they last received a mammogram and signed a HIPAA form
releasing this personal information. We believe this was a testament to our effective
interviewers (several of whom are now SUHI staff) and their ability to gain the trust of the
women we interviewed.

In November 2008, Giselle Vasquez and several of the health educators started the preparation of
medical abstraction activities. Together, they reorganized our files, ensuring confidentiality of
the women and prepared packages for each medical facility –including copies of every signed
HIPAA form. As of March 2009, abstraction at two sites (Mount Sinai Hospital and University
of Illinois at Chicago) has been completed and five others are in process (Rush University
Medical Center, Northwestern Memorial Hospital, Cook County Stroger Hospital, Saint
Elizabeth Hospital and Norwegian American Hospital). Records at other facilities are being
retrieved and abstracted.

Once again, the entire HHL team is contributing to the medical abstraction activities. Giselle
leads various sub-teams to abstract the data and check/re-check our work. Each record is
reviewed by at least two members of the HHL Abstraction Team which include DeShuna, Teena,
Kristi, Ami, and Jade Dell (SUHI’s Research Coordinator, whose time is in-kind). Wanda
Rodriguez, our EHP CHE, enters all of the data; Celevia Taylor, WHP CHE, checks each record
in the database for mis-coding and Giselle spot checks all of the entries. Medical abstraction

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                                                                                            Section 2

methods are often dependent on the types of files received from each site, but our general
abstraction procedures and quality assurance measures are consistent and taken very seriously.
A complete report of these processes is being written up and will be shared in the next Annual
Narrative Report.

The next step will be to analyze the data and examine mammography concordance. With
guidance from Garth Rauscher and Kristi Allgood, a more detailed analysis plan will be
developed in the upcoming year. We plan to present these data to the community and other
stakeholders in Chicago (including the Metropolitan Chicago Breast Cancer Task Force and
other agencies working in breast cancer) and to publish these findings.

In summary, during the past year we have conducted several formal and informal assessments
that has guided our thinking, planning and evaluation efforts. The formal surveys conducted will
serve as our baseline data to document change in our 24 month intervention - from 2008-2010.
The informal relationships we have built and information we have gathered has taught us who
the key stakeholders are, where and how women obtain information in these community and who
we should be targeting when delivering HHL messages. This part of our learning is helping us
identify how to give ownership of HHL to the community and ultimately make HHL

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                                                                                              Section 3


After completing the baseline survey, one of our first          Figure 3. Helping Her Live Program
                                                                Brochures Images in English and Spanish
tasks was to develop the intervention. We hired and
trained a complete HHL team and prepared all of the
Educational Materials for the community in just three
months. As part of this process, we produced a program
brochure in English and Spanish outlining our
intervention’s goals, key messages for the community
(Figure 3, also in Appendix D). DeShuna Dickens, (NL
Sector Coordinator), along with former HHL Coordinator
(Lisa Stevak) prepared the initial drafts of the
comprehensive breast health education curriculum for the
entire HHL Staff in June 2008. They finalized the
curriculum with input from experts in the field and others
on the team in September 2008. Between July-August
2008, they also led several training sessions and invited
guest speakers to train the entire HHL staff on various health issues, what optimal breast health
care looked like and how to provide such care along the spectrum of breast health services. In
this Section of the report, we describe hiring and training of HHL staff, along with the
development of our Community Navigation Intervention (July-Sept 2008).

Hiring and Training CHEs for Outreach Navigation
The Community Health Educators (CHEs) for the outreach portion of the intervention were
recruited and interviewed from the group of interviewers contracted during the HHL Survey
(Phase I). Although we sought breast cancer survivors for these positions we were not able to
hire any because the survivors did not apply for the positions. But we were able to hire
individuals with a cultural connection to our target communities and a sincere passion for
helping their own community. In addition to the one CHE already on staff (Regina Flowers),
three additional CHEs (Wanda Rodriguez, Celevia Taylor and Ana-Rosa Garcia) were hired to
conduct outreach and education activities in the targeted HHL communities along with Research
Assistant (Pauline McCaskill).

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                                                                                               Section 3

Once the CHEs were hired, they spent approximately 45 hours in training sessions in preparation
for providing breast health workshops in the field. They began by participating in a 3 day, 6
hour per day (18 hours total) Train-the-Trainer workshop provided by various staff on the HHL
project (see detailed curriculum in Appendix C). The training curriculum included the basics on
what cancer is, types of cancer, breast physiology, how breast cancer develops, the epidemiology
of breast cancer, risk factors for development of breast cancer, the importance of breast health
screening and types of breast cancer screening methods. They also learned about local programs
that assist women with paying for mammograms and breast cancer services and what it takes to
navigate a patient through breast cancer diagnosis and treatment in a hospital setting.

In addition to the core 18 hour training, CHEs also participated in 6 hours of supplemental
education with experts in the breast health field (i.e., a breast surgeon and radiologist, a tour of
the Sinai Radiology Department, etc.). Because the primary job of the CHEs is to conduct breast
health workshops in the field, significant time was also spent on teaching presentation skills and
practicing the HHL Breast Health Awareness presentation. CHEs spent approximately 19 hours
practicing the presentation with staff and a focus group of survivors. After successfully
completing the presentation practice sessions, the CHEs were shadowed for 2-3 workshops by
their immediate supervisors to ensure that they were comfortable presenting and to ensure the
quality of the information that was given to the community.

In practicing the presentations, several of the CHEs offered new insights on how to improve the
messages of the presentation and make it more appropriate to each of their respective
communities. Their insight was most valuable and essential to the HHL program. Most
noteworthy, Regina Flowers, NL-CHE during her practice sessions, would end her talk by asking
women to stand up and state the following, in her own words:

       Ladies, there are 4 things that I want you to take from this presentation.
       If you don’t have a primary care physician, we can help you.
       If you never had a mammogram, we can help you get one.
       And ladies, know your body, it is so important that we know what our bodies go through;
       And fourth, stand up, look the person you’re standing next to in the face, and
       Help Her Live, Gain Control!

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                                                                                             Section 3

These words have inspired the HHL team to also make a pledge that:
                            I WILL CELEBRATE LIFE AND GET A MAMMOGRAM.

The above statements have been published in our HHL brochures and are recited by all women at
the end of the presentations. This illustrates how the CHEs made the presentation their own and
speaks to the level of commitment and determination that each HHL team member exhibits.
Overall, the training was very interactive in nature, with CHEs engaging in a great deal of
discussion and reading and numerous role-playing activities. In an informal evaluation by the
CHEs on their experience and thoughts about the training, the majority felt it was very beneficial
and were excited that we spent so much time with them to make sure they were comfortable in
the field.

As a result of successfully training the HHL CHEs, we were approached by one of our partner
agencies, Sisters Embracing Life (SEL), to provide a Train-the-Trainer breast health workshop
for their volunteer outreach workers. SEL is a non-profit organization founded by cancer
survivors and based in Austin– a community neighboring North Lawndale and West Humboldt
Park. They aim to provide support to women diagnosed with cancer and recently received a
grant from the Metropolitan Chicago Breast Cancer Task Force (MCBCTF), which is funded by
the Avon Foundation. Seven volunteers from SEL were trained in November 2008 by HHL
education and sector coordinator, DeShuna Dickens. Another Train-the-Trainer workshop is
scheduled for another partner agency, Westside Health Authority (also funded by the Avon
Foundation) in March 2009. These trainings are significant and demonstrate our concerted effort
to build community capacity to educate women in the communities we serve.

Development of the Outreach Navigation Program

        a. Developing the Breast Health Awareness Workshops
Once the CHEs were trained, considerable time and effort was spent in the development of the
HHL Breast Health Awareness presentation. DeShuna also led the HHL team in developing
health educational materials to promote breast health by encouraging early detection and routine
screening in Humboldt Park and North Lawndale. The majority of the content was adapted from

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                                                                                               Section 3

other local breast health awareness presentations and key take-home messages were prioritized
based on the baseline survey findings and lessons learned from the MCBCTF.

Project staff also spent significant time developing key messages and refining the presentation
for cultural sensitivity. To ensure that the presentation would be culturally relevant to the target
communities, we pilot tested the presentation with women from the community. Two sessions
were held in August 2008 and nine women attended. These participants included women who
were currently going through treatment, survivors of breast cancer, young women (<30), and
mammogram eligible women who had never had a mammogram. These women were asked to
give feedback on the CHE’s presentation skills and to evaluate the presentation for its content in
terms of cultural relevancy and whether the key messages were clear. Overall feedback was very
positive and we received great feedback about including more pictures that would connect to the
audience and clarifying some of our key messages. We incorporated all this valuable feedback
into the presentation. We also were able to assist one woman with getting a mammogram from
these practice sessions.

There are three different formats that we use to present the information to the community: (1) a
formal presentation with a PowerPoint presentation/projector and laptop, most often for larger
audiences; (2) informal presentations and groups larger than five with large boards and an easel;
and (3) smaller flip charts of the presentation, most often used for groups of five or less in the
home setting.
                                               Figure 4. Mammogram Reminder Magnet

The final presentation is the essence of the
HHL Workshop. When CHEs give
workshops in the community they present
data on disparities in Chicago; introduce
HHL services and why we are here; and
describe the basic biology of breast cancer
and how it develops, symptoms and
common known risk factors that are modifiable or not. In addition, HHL educators emphasize
the importance of routine screening and early detection and how the HHL program can help

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                                                                                              Section 3

women get screened. Lastly, as part of the presentation, our CHEs often bring leaflets and take-
home materials with them. These include our HHL brochures, magnets (Figure 3) and other
gadgets with HHL information on them, along with a folder of educational literature, which has
been reviewed and selected by our Sector Coordinators, from various sources (e.g., American
Cancer Society). A sample folder of the educational and health promotional materials we give to
women is attached as Appendix D.

An essential part of our workshop also involves its evaluation. Sector Coordinators, Teena
Francois and DeShuna Dickens, developed several quantitative and qualitative evaluation tools
to assess what women learned from each workshop and obtain community input on how to
improve our work. At each workshop, HHL staff request attendees to complete a Workshop
Attendance Sign-In Sheet. This form is used to track the number of individuals who attended
the workshop and were educated by the workshop. Prior to giving the educational presentation,
all attendees are asked to complete an anonymous Pre-Test Questionnaire to assess baseline
knowledge of breast cancer facts. Following the presentation, the participants are asked to
complete an Evaluation Form (which includes the Post-Test Questionnaire). This form
consists of qualitative and quantitative questions to assess whether the participants understood
and liked the information contained in the presentation and to evaluate the presenter. In addition,
the form contains a series of important post-test questions (same as the pre-test) to assess the
knowledge gained from the workshop. Lastly, each presenter completes a Presenter
Assessment Form following every workshop. This form has questions regarding the type and
quality of the venue, description of the audience, and other logistical issues that might be
relevant for future workshops. The information collected from the Pre-Test Questionnaire and
the Evaluation Form is entered into the HHL Evaluation Database (created in Microsoft
Access) to track the cumulative impact of the workshops.

The final HHL Awareness Presentation, along with comprehensive instructions on how to
conduct a workshop, are printed in English and Spanish and bound in a Facilitator’s Guide (see
Appendix E for selected pages). The Evaluation Forms including the pre/post questionnaires and
workshop assessment are also available in this guide and the Workshop Folders.

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                                                                                                   Section 3

        b. Setting up the Resource Guide
Given the unprecedented nature of this aspect of the HHL intervention, we dedicated June 2008
through September 2008 to establish a solid foundation to appropriately assist women in
navigating the medical system in their communities. Two staff members collaborated in this
effort, Teena Francois and Pauline McCaskill. For three months, Pauline collected information
on medical facilities based on the zip codes within our target communities. She created a spread
sheet listing 147 primary care doctors in our area including important information such clinic
hours, languages spoken by clinic staff, types of insurances accepted. Two additional lists were
created for mammography and cancer treatment facilities. Acknowledging that lack of insurance
is a major barrier to care, Teena and Pauline researched payment methods for breast health
services for underinsured and uninsured women. We collected information on eligibility
requirements for the two state programs, Stand Against Cancer (SAC) Program and the Illinois
Breast and Cervical Cancer Program (IBCCP) that provide free breast and cervical care for
uninsured women. We also collected support service information for women diagnosed with
breast cancer (e.g., dental care, child services, etc.).

The result is the creation of a comprehensive HHL Resource Guide, which is considered our
“bible of services.” The Guide outlines key primary care providers, mammography facilities and
treatment centers (i.e., hospitals) in our area. Roughly 30 of the 147 primary care facilities were
included in the Guide. We selected sites that accepted all forms of insurance and also
participated in at least one of the free state-supported programs. Though not included in the
HHL Guide, we still have the list of primary care facilities beyond our target communities
because we received some phone calls from women beyond our target areas and want to identify
places where women can go for primary care to obtain a mammogram referral and follow up care
that are near their home. (Selected pages from the Resource Guide are attached in Appendix F.)

        c. HHL Navigation Services
There are three main avenues through which the HHL team reaches women in the community:
its Breast Health Workshops, participation in Community Events and through its Hotline. In all
cases, women are given the opportunity to tell us how we can help them obtain the services they
need. In each instance, we have a slightly different way of gathering the necessary information
to assist them.

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                                                                                              Section 3

At the Workshops, HHL Educators ask women to complete Service Request Form (see selected
pages of the Facilitator’s Guide, Appendix E). This form details navigation services offered by
HHL including scheduling a mammogram or primary care visit and is available to women of all
ages.   Because women are rarely seated and often in a rush, we also ask women at Community
Events for their contact information so we can call them with possible appointment dates and/or
respond to their other inquiries.

In September 2008, we established the HHL Hotline (1-877-HER LIF 2 /1-877-437-5432) so that
women could easily reach us. The HHL Hotline is unique because it provides direct service to
all callers by scheduling appointments and/or calling doctor’s offices with the client on the
phone. The HHL Hotline is specific to women living near or in HP and NL. With the HHL
Resource Guide, we are able to assist women in finding a medical home; obtaining a
mammogram; receiving timely follow up for abnormal exams; obtaining financial assistance for
all breast health services; providing transportation; finding appropriate social support and
assisting women in navigating the system.

To ensure that all Hotline calls are handled in a standardized, efficient and professional manner,
a Client Intake Protocol was developed. Teena and Pauline developed the protocol as means to
monitor all of our clients. The protocol describes how to answer hotline calls and service
requests, take down information systematically, respond and track all requests. Pauline
McCaskill and Wanda Rodriguez have been trained to provide individualized assistance to meet
the specific needs of the women and continue to follow up until all their needs have been met.
Calls are answered between the hours of 8am to 5pm, Monday through Friday. A voicemail
system will answer calls during off-hours and all unanswered calls which will be returned on the
next business day. Hotline assistance is provided in English and Spanish. This aspect of our
intervention is vital to ensuring women can reach us any time to get needed appointments or
questions answered.

Pauline McCaskill, our Hotline Coordinator and Research Assistant, receives all Service
Requests, whether they came from the Workshop, Community Event or the Hotline. She
responds to each Service Request by calling the woman and completing a comprehensive Intake

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                                                                                               Section 3

Form. Spanish-speaking clients are handled by Wanda Rodriguez. The Intake Form (included
in the Resource Guide, Appendix F) provides greater detail about the client’s needs, their
demographic information to determine eligibility for various programs which will finance their
care if needed, etc. This information allows us to better assist each woman, who is now
considered an HHL Client. For clients who are uninsured we explain the importance of primary
care and obtaining a referral to get a mammogram. We give the clients options on where to go
and/or make appointments on their behalf. If we schedule an appointment, our staff follows up
with the client and makes arrangements for transportation or social support if needed. Many
clients request HHL staff to meet them at their appointments. We track all services from start to
finish, including but not limited to, scheduling a primary care appointment, getting a
mammogram referral, getting a mammogram, receiving the results, getting any follow-up
services if necessary and receiving an annual mammogram reminder.

Information from the Intake Form is entered into the Client Database (a Microsoft Access
database) for appropriate tracking. The database is updated after each contact with the client or
after each action is taken on a client’s behalf (i.e., if an appointment is scheduled or missed,
client is called but not reached, transportation is arranged, etc). The efficiency and effectiveness
of HHL Outreach Navigation is determined by the outputs measured in this database. We also
track the time required by HHL staff to complete each request and ensure that no request remains
outstanding. We follow up with clients to ensure that they received the services requested and
ensure that reminders are given for routine screening.

In summary, we spent about three months preparing to roll-out this new intervention with the
appropriate training, development of materials and evaluation tools. We are equipped with the
staff and resources to respond to and follow up with and account for all requests for information
and/or services that we receive. In the next Section, we describe how we have implemented
these activities in the first six months of the HHL Intervention.

                                                    Avon Foundation Annual Progress Report 2008-2009
                                                                                            Section 4


In this Section of the report, we describe our experience in implementing the HHL intervention
and how we have helped women access mammograms. Specifically, we describe our unique
outreach activities and present results from our six-month Workshop evaluation. Lastly, we
share stories from our staff about clients we have navigated to care and summarize what we have
learned in this process.

Community Outreach
To effectively implement our HHL program, we place great importance on our outreach efforts.
We believe it is imperative that we collaborate with CBOs, churches, political leaders and others
to engage stakeholders and residents (especially women) and earn their trust before we raise
awareness of breast health care and increase access to screening services. Our Coordinators have
made numerous relationships in their respective communities, many of which have led to greater
inroads and converted into improved mammography services. Some of these relationships are
highlighted below.

One important HHL partner is The Greater Humboldt Park Community of Wellness (GHPCOW)
Steering committee. GHPCOW is a broad coalition of organizations and individuals dedicated to
improving the health status of Humboldt Park through community leadership, collaboration and
culture. Their membership consists of community residents and over fifty organizations,
including healthcare providers, human service agencies, advocacy groups, research institutions
and institutions of higher education. GHPCOW has welcomed the HHL program as an asset to
the current health efforts taking place in HP and are dedicated to assisting HHL make breast
cancer prevention a priority for the Puerto Rican and Mexican women living in Humboldt Park.
We also work closely with the Puerto Rican Cultural Center (PRCC) who has provided our team
with strong recommendations on how to interact with and make an impact on the vulnerable
populations of women living in HP. PRCC has been essential to our making contact with key
stakeholders in EHP and in gaining the trust of the community.

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                                                                                              Section 4

The West Humboldt Park Development Council (WHPDC) is another influential community
partner. WHPDC represents approximately eighty community based organizations and
neighborhood groups throughout the West Humboldt Park area to monitor, coordinate, and
implement programs, projects and activities related to family, community and economic
development. WHPDC has been instrumental in spreading the word about the HHL program
and connecting our staff to other community stakeholders including city council leaders, like
Alderman Walter Burnett Jr. of the 27th ward. Alderman Burnett has been very supportive of the
HHL program. He has not only assisted the program in establishing additional relationships with
key stakeholders in West Humboldt Park but also featured HHL on his cable TV show twice
(June 2008 and March 2009). The show airs on the second and forth Monday of the month and is
broadcast to millions of Chicago viewers.

Though it is a non-traditional partner for breast cancer prevention, the West Humboldt Park and
North Lawndale found the Chicago Police Department to be a helpful ally in spreading the word
about the HHL program. The Chicago Alternative Policing Strategy (CAPS) meetings are an
effective venue for getting information into the community and in identifying other community
leaders. CAPS is a partnership between community members and the local police district. The
group brings the police, the community, and other City agencies together to identify and solve
neighborhood crime problems, rather than simply react to their symptoms after the fact. Not
only are these meetings a venue for residents to address their health needs but the meetings have
also been an effective way of getting health messages out to the community. Our involvement in
these meetings has not only been beneficial in getting our names and messages out into the
community, but they have also led us to other key stakeholders such as the Lawndale Christian
Development Corporation and active community residents in West Humboldt Park. Members of
this organization have taken a sincere interest in helping us to get our message out into the
community through their newsletter and have also given support to our plans of hosting a local
HHL Community Walk as part of their already established ‘Sunday Parkways’ event, which will
cross all of our community areas.

To build partnerships we participated in a number of community events which have led to
several client service requests. In August, we participated in the 27th Ward Back to School

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                                                                                             Section 4

Picnic and the 37th Ward Health Fair in Humboldt Park. Both of these events were sponsored by
the Aldermen of the respective Wards and provided avenues to provide information to hundreds
of community residents. In September 2008, we hosted by the Convoy of Hope in collaboration
with various organizations, community leaders and political officials which brought together
hundreds of African American women from the Westside. HHL, along with Sinai’s patient
navigators, were able to talk to many members of the community. In early October 2008 we
played an integral part in Cook County Commissioner Steele’s community forum titled “How
Healthy Is Your Zip Code.” Its purpose was to highlight the diseases and conditions that were
currently affecting residents in the NL community, including breast cancer. We worked with the
program’s coordinators to locate a local breast cancer survivor to speak at the event and set up a
table to speak to members of the community about breast cancer. Our participations in these
events led to important contacts as we prepared to roll out our HHL intervention.

Outreach Navigation Impact
At each step of the intervention, we evaluate our work, learn from the process and make
improvements to our protocols. Teena Francois manages this aspect of our work and monthly
offers new insight into the progress of HHL activities.

One way we evaluate our outreach efforts is by tracking the number of Breast Health Awareness
Workshops, community events, meetings and media citations each month. During the first six
months of implementing HHL (October 2008-March 2009), we distributed thousands of
brochures, completed 135 Workshops and participated in 52 Community Events (e.g., health
fairs, teachable moments) - reaching over 4,300 women. We organized or participated in 51
Community Meetings, which resulted in important relationships with community hospitals and
medical clinics, city councilmen, newspapers, church leaders, and others. Our outreach efforts
have also resulted in 13 different media citations (Appendix G).

In addition to tracking our community encounters, we track the impact of our outreach efforts
through our navigation services. From our workshops alone, 835 women completed the post-
survey. 40% were 40 years and over and 45% self-identified as African American, 20% Puerto
Rican and 17% Mexican. Interestingly, we have found that roughly half (47%) of the women

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                                                                                            Section 4

reached were insured. Among women age 40 years and over (n=410), 35% told us that they had
4-5 mammograms in the past 5 years and 18% said they never had a mammogram.

Though these data are not as comprehensive as we would like, they provided a great deal of
insight to our planning. We learned that outreach efforts are reaching older and younger women
alike. Although young women are not the target of our HHL intervention they are emerging as
important catalysts in encouraging their mothers, aunts and grandmothers to learn about their
breast health and to obtain a mammogram. Because so many younger women are attending our
workshops, we are developing what new messages will be most appropriate to them and how we
can assist them in promoting HHL and encouraging others to get mammograms routinely. We
also recognize and support the empowerment of young women to practice breast health at an
early age. More importantly, these data tell us that we need to expand our tracking to women
who never had a mammogram. While procedures are in place for women to request a
mammogram, we are working towards being more proactive in soliciting women who state they
never had a mammogram. Lastly, the vast majority (70%) of HHL clients to date are uninsured.
While HHL has been successful in tracking their mammography use, we have not been able to
track mammography utilization among insured women, mostly because they do not request
assistance from us. In fact, several of our educators have anecdotally heard from women that
attended their workshops who then felt compelled and were reminded to get their mammograms.
We are currently in the process of developing new strategies to track all women who we
encounter as opposed to just those who request HHL services.

During the last six months (October 2008-March 2009), HHL received 342 service requests,
predominately from the Breast Health Awareness Workshops conducted by our educators. Of
these requests, we were only able to reach 182 (53%) of them. Difficulties reaching these
women included disconnected or wrong phone numbers, despite our calling within days of the
events. For women we cannot immediately track down, we mail information and/or rely on our
CHEs to connect with them again. Because we lose contact with so many women, we are
exploring new strategies on how to eliminate our loss-to-follow-up rate. One new strategy is to
make evening and weekend hours in an attempt to reach women and another is to request access
to medical records from all women.

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                                                                                           Section 4

From our hotline, we received about 30 calls             Box 1. Hotline Client Stories
and hope that more women start using this
                                                 A 33 year-old woman called the HHL Hotline
number. Of those that called were women          in October 2008. She needed a mammogram
who had heard about our program from             and didn’t know how to get one. The client has
                                                 a family history of breast cancer. The client
fliers we left in the community or through       had leakage and small black marks around the
                                                 areola of the breast. She was fearful of loosing
word of mouth. In response to women who
                                                 her breast and wanted help getting an
wanted a mammogram, we scheduled 128             appointment right away. I scheduled her
                                                 appointment for 11/19/2008. Client attended
primary care appointments. To our best           the primary care appointment and received a
documentation, we assisted 47 of them in         referral to have a screening mammogram
                                                 done. The client had her mammogram on
making a mammogram appointment                   December 5, 2008. Because of HIPAA policies,
thereafter. (It is likely that many of these     we do not have permission to access her
                                                 records at this time but we are trying to reach
women had mammogram appointment                  her to make sure she received her results and
                                                 assist with any follow-up care that may be
scheduled by their PCP, however. Our
current tracking system does not allow us to
                                                 A 37-year old woman called the HHL Hotline
follow these women.) We also assisted 44         and we scheduled an appointment for her in
women with social support (e.g., CHEs went       November 2008. To follow-up, we called her
                                                 to ask her about her results. She told us she
with the client for her visit) and 16 women      had not received them, which prompted us to
with transport to their appointments (in         call the clinic and ask them about this client
                                                 and her results. They could not tell us the
some instances, our CHEs picked up women         results, but did send her a letter. She called us
                                                 in January 2009 telling us that she received a
from their homes as illustrated by the stories
                                                 breast imaging letter. The client’s mother had
at the end of this report). Our Hotline          died from breast cancer and she was very
                                                 scared to get a mammogram. She expressed
Coordinator documents many of the client         that she is very happy that our staff
stories, as described in Box 1, which            encouraged her to get her mammogram. Her
                                                 results were negative and she was very happy
illustrates some of our challenges and           to have made it over this barrier. Our client
successes.                                       looks forward to getting her mammogram next

Again, we now intend to track all women               - Pauline McCaskill, Hotline Coordinator/
                                                                            Research Assistant
with whom we come in contact. Prior to
January, we lost many women because we did not have permission to contact medical facilities
about the visit. For instance, we would not know if a woman attended an appointment that we
scheduled for her and/or whether she appropriately received a mammogram referral. As a non-

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                                                                                                    Section 4

medical entity, we recognized that we needed explicit authorizations from women to follow up
with their providers and track their care.

In February 2009, we made the first revision to the Service Request Form asking women for
permission to access their medical records so we could track their care. This document is in
compliance with all federal HIPAA requirements and protects the confidentiality or our clients
(similar to the procedures we had to follow when administered the baseline survey in the
community). We can now track whether their primary care appointment resulted in
mammograms and whether the mammogram results were normal or any follow-up services are
necessary. Figure 5 shows how we were able to successfully track the services received by
women who signed the HIPAA Forms.

                    Figure 5. Tracking Helping Her Live Clients Who Signed the HIPAA Form

                                           25 with HIPPA
                                            HHL Clients†

                                         25 Scheduled PCP

  3 Pending PCP Appts      3 Missed PCP Appts                                      19 Attended
                                                                                   PCP Appts

                                             17 Mam                                              2 Age Ineligible
                                         Appts Scheduled

                 14 Attended Mam          1 Missed Appt          2 Pending Appts

     8 Normal Mams          6 Abnormal Mams

                             6 Diagnostic FU
                             Appts scheduled

  2 Breast Ultrasounds =     1 PCP FU Appt =         3 Pending Appts
         Normal               Benign Finding

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                                                                                            Section 4

In addition to improving our protocols for protecting our patients’ medical information, we have
also been successful in improving the quality of care delivered to women. One particularly
passionate faith leader in the community heard about our project and came up with the idea of
our team partnering with their church to not only conduct a Breast Health Workshop but to also
bus women to a medical facility to get same day mammograms. As a result of this pastor’s
creative thinking and our relationship, we were able to bring in nine women to get their primary
care visit and mammogram visits completed on the same day. We tied the event in to
Valentine’s Day and encouraged women to love themselves and their breast on this day (Figure
6). Women spent the entire day at the Sinai Health System to attend their primary care and
mammography screening appointments. The church provided transportation, fed the women
breakfast and lunch and the NL HHL team provided small Valentine’s gifts as tokens of
appreciation for the women taking charge of their health. This event was very successful and the
majority of the women received a clean bill of health at their follow-up appointments (see also
Appendix G for a copy of church newsletter). From this group there were three women who
were found to have suspicious results, of which two were benign and the last has her follow-up
visit pending.
                                                  Figure 6. Flier from Carey Tercentary Church Event

On March 19, 2009, our team arranged
another event for seven women from the
Dream Center Homeless Shelter to get same
day primary care and mammogram
appointments. Of them, four women had an
abnormal mammogram screening and were
immediately taken by one of Sinai’s patient
navigators, where they received an ultrasound
exam. They received their results (which
were all thankfully negative) via letters from
their primary care physician but because these
women also signed our Client Service
HIPAA, they gave us permission to confirm
that they had negative results and did not need

                                                     Avon Foundation Annual Progress Report 2008-2009
                                                                                             Section 4

further follow-up. This process taught HHL the importance of tracking all screening exam
results and offered important insight as to how services could be improved within the Sinai
Health System. Overall, the day was successful due to the collaborative efforts of Pauline
McCaskill, the Primary Care Physician (Dr. Lamenta Conway), the staff at the Radiology
Department, the caseworker at the Dream Center and the Sinai’s invaluable patient navigators.
Because the Dream Center receives new clients every couple of months, HHL plans to continue
to work with the shelter so that every woman that enters the Dream Center will attend one of our
workshops and receive a mammogram.

Ideally, we believe that a woman should be able attend her primary care visit, receive her referral
and obtain her mammogram screening all on the same day. However, in the communities we
work, this rarely occurs. Thus, in collaboration with dedicated medical staff and community
members, the fact that we were able to arrange for two groups of marginalized and uninsured
women to receive such quality same day care is a great feat. We hope to continue this model of
care and work with Sinai and other neighboring hospitals to make it happen.

Lastly, we would like to share some of our experiences in working with women and
implementing the HHL program. The following pages contain reflections from HHL staff about
the program and the clients we serve.

The most memorable client that I have met was a Latina woman from a workshop. She had just
had a mastectomy a year ago. This fifty year old woman shared her experience with me on how
she discovered she had breast cancer, the process she went through for getting treatment and her
overall emotional and physical stress she underwent because of breast cancer. We talked about
our program and as a workshop attendee she also had a chance to listen to the presentation and
was very impressed with what “Helping Her Live” is doing in the community. Her only wish
was to have had such a program a year ago when she was undergoing surgery and treatment for
breast cancer.

I am so thrilled to be working as a Health Educator for the Sinai Urban Health Institute and the
HHL program because it has given me the opportunity to give back to the community and bring
hope to at risk women that do not have adequate access to breast health care. My experience
with the HHL project has been amazing and I am grateful to the Avon foundation for funding this
wonderful project.

                                                ~ Wanda Rodriguez, Community Health Educator

                                                      Avon Foundation Annual Progress Report 2008-2009
                                                                                              Section 4

One of my most memorable clients was a 38-year old Hispanic woman who survived breast
cancer. This 38 year old woman, who attended a workshop in February at St. Marks Church,
stated that she found a lump the size of a golf ball on her right breast near her axilla while
taking a shower. She called her doctor and scheduled an appointment. On her appointment date
the doctor found another lump the size of a quarter. They immediately sent her for a
mammogram and breast cancer was discovered. She underwent surgery where a mastectomy
was performed and immediately started her radiation therapy after surgery. She mentioned that
even though her cancer was at stage 3, luckily her it did not spread to any major organs. She
was grateful to have had found the lump and that her doctors worked fast on getting her treated.
She also expressed her gratitude to the HHL program and stated that the city of Chicago should
have much more programs like ours, because there are many women in the community who do
not have access to quality care.

These are the moments that make my job a gratifying experience. I am very happy to be part of
the Sinai Urban Health Institute as a Health Educator; because it has given me the chance to
help the Hispanic women in my community in acquiring better breast health and reducing
mortality in the Humboldt Park community. My sincere appreciations to the Avon foundation in
helping us make this possible.

                                              ~ Ana Rosa Garcia, Community Health Educator

I have done two presentations at Lena Washington Shelter in North Lawndale. Every time I have
gone the women have been very excited about hearing the presentation. In December as part of
our growing relationship with this shelter we were able to collect and purchase toiletry items to
donate to the residents for Christmas. During the month of February we gave away chocolate
candies as a raffle for the women. Both of these activities were very well received by the women
and the director of the shelter.

Shortly after our first presentation with the Lena Washington Shelter, I thought it would be a
good idea to do something nice for the ladies. I wanted to do this to show the women that I really
care and to thank the director of the shelter for letting us come in to speak with the ladies. So,
on one Saturday evening in December, I went to the shelter to spend time with the ladies. I did
not do this as part of my job responsibilities but on my own time. I really wanted to spend time
talking with the women outside of work to let them know that someone really does care about
them. I ordered pizzas, fries and pops and asked the women to sit back and relax while I served
them. It was a really great experience. I was so happy to be able to do this for the ladies and
their kids. The kids had so much fun.

I am so happy for the opportunity to have done a presentation at this shelter. As a result of my
reaching out to this shelter to do a presentation, I’ve built a great relationship in the community
and hopefully have given the women the knowledge they need not only about breast cancer and
breast health, but that we really do care about helping them live.

                                                  ~ Regina Flowers, Community Health Educator

                                                     Avon Foundation Annual Progress Report 2008-2009
                                                                                             Section 4

It was November, 2008 and I was scheduled to conduct a Breast Health Awareness workshop at
Breakthrough Ministries (BM). BM is a women shelter on the west side of Chicago within the
Humboldt Park community. I presented to the residents of the women’s shelter. In the
presentation, there is a slide that shows how cancerous cells can begin to invade neighboring
healthy tissue. After I explained the slide, a young woman in the audience raised her hand. I
nodded my head giving the “OK” to ask her question. She lowered her hand and said “my sister
and I have breast cancer.” Turning completely towards her, I asked her “how do you know you
have breast cancer?” She replied “a doctor had diagnosed my sister and me three months ago.”
She went on to say “my sister is in chemo now.” I asked her if she was in treatment as well and
she replied “no.” “Why not,” I asked. She simply nodded her head with a verbal admittance
that she was too afraid. Again, I was in the middle of a workshop with an audience of 10 to 15
women so I asked her if she would be willing to give me a couple of minutes of her time once the
workshop was completed and she said “yes.”

After the workshop, I sat down to talk to this young lady. I purposely referred back to the
information that had just presented to her in the workshop to give her a sense of urgency of how
important it is to get quality treatment in a timely manner. I offered to accompany her to the
Primary Care Physician (PCP) appointment and every follow up appointment as needed. She
declined that offer but with some convincing, she finally agreed to the initial PCP appointment
“alone.” We (Pauline McCaskill and I) worked closely with the young lady and her case worker
at the shelter to schedule an appointment time and date. We also provided transportation, via
the Sinai van, to pick her up and drop her back off safely. I now sadly report that the young lady
did not keep the appointment and per our last conversation, she has no interest in rescheduling
the PCP appointment. She expressed her need to take some more time to think the matter over.
Before I could respond, she hung up the phone.

Her case worker now acts as a liaison to help convince the young lady to get into treatment as
soon as possible. This woman has proven to be one of our more challenging clients. We have
arranged to have a breast cancer survivor from our partner organizations, Sisters Embracing
Life, to attend one of our Workshops at the shelter and we hope that the survivor and this young
woman will connect. In the meanwhile, we continue to speak with her case worker to reach this
young lady and will persist until she receives her treatment and survives her diagnosis.

                                                  ~ Celevia Taylor, Community Health Educator

My client, a 52 year African American woman, lives in the North Lawndale Community. I met
the client at a breast cancer event I organized at the Carey Tencetary Church in January 2009.
After I spoke, the client approached me to say she hadn’t seen a doctor or received a
mammogram in years. I asked her why; she stated she didn’t have insurance after she had to
leave her job, due to a previous illness.

The client had been diagnosed over a decade ago with cervical cancer; she worked all her life
up until she became ill. She had to quit her job during her treatment and once she was told she
was free of cancer her benefits were discontinued at which time she no longer had a job or

                                                    Avon Foundation Annual Progress Report 2008-2009
                                                                                            Section 4

insurance. The benefits she received from the state were temporary and once she was cured she
no longer could receive these state benefits anymore.

My client came to our Valentine’s Day event and I encouraged her to reapply for benefits to seek
medical care due to her previous diagnosis. She is currently complaining of left side pain in her
hip and leg, she says she was once told that the cancer from her cervix had spread to her hip.

Since our meeting, she had three follow up appointments and is now being encouraged to see the
oncologist, along with a follow up appointment for a possible mass in her left breast. I continue
to communicate with her weekly and encourage her to keep her appointments so that she can get
new benefits as well as treatment for any medical problems she is currently having.
                                                        ~ Gloria Seals, Intervention Coordinator

We participated in the Sinai Community Institute Diabetes Fair in March 2009. We had the
chance to talk to women and present them an overview on the HHL program. A 36-year old
woman approached us and told us her story. She stated that she was diagnosed with breast
cancer when she went for her baseline mammogram. Her cancer was at an early stage and she
expressed her gratitude on how the mammogram found her cancer early, she also expressed
concern for all those women that do not have a chance to have their mammogram at an early
age besides 40. She believes that women should get their mammograms at an earlier age and
that it is important that health care providers understand the importance on this. She was
thrilled to know that HHL exists and that we are going out into the community and educating
women on breast cancer and its outcomes.
We also had an opportunity to talk to a young woman that has a family history of breast cancer.
She is 30-years old and is very worried about being diagnosed with breast cancer. She stated
that her great grandmother died of breast cancer at the age of 38, her grandmother died at the
age of 40 and that her Mother died of breast cancer when she was just 42 years old. She
mentioned that her insurance UHC would not pay for her mammogram and she wanted help
from the HHL program to see if we could help her get a mammogram at a reduce cost. We
exchange information and assure her that we will work with her to help her get the service and
care she needs.
We are once again thrilled to have had the opportunity to share the HHL information to all
women in the community. HHL was exclusively designed to educate women and help them
understand the importance of early detection and to let them know that we are here to help them
access quality and equal breast health care.
                 ~ Wanda Rodriguez & Ana Rosa Garcia, Community Health Educators (SUHI)

Our initial contact with the client happened at 37th Ward Picnic held on 10/09/2008. When we
called her, we learned that client was bilingual and in need of a mammogram and
transportation. Wanda Rodriguez, the East Humboldt Park Community Health Educator, spoke
with client and client’s son. The client’s son tried to discourage her from having a mammogram
and speaking with staff. After showing concern and compassion our staff convinced the client

                                                      Avon Foundation Annual Progress Report 2008-2009
                                                                                              Section 4

that she would not be alone in the process and that the HHL staff would transport her and escort
her to the appointment. The client’s appointment was made by the HHL staff for 10/28/2008 at
the Armitage Clinic. Giselle Vasquez, Project Coordinator for East Humboldt Park, took her to
her appointment. The client was very scared of the process. Giselle helped her understand and
comforted her to complete the primary care visit. The client received a referral for a
mammogram which was scheduled on 11/25/2008 and was transported to that appointment by
Wanda Rodriguez. We followed up with her four times (once every two weeks) until she told us
on 01/21/09 that she had received her results, which were normal/negative. The client was very
happy to complete the process.

                - Story of HHL Client, Pauline McCaskill, Hotline Coordinator/Research Assistant

Initial contact with this client was through the HHL hotline on 10/28/2008. Client was in dire
need of mammogram because she had major problems with breast ranging from leakage to
indention in the breast skin to discoloration and lumpiness. We set up primary care appointment
for her on Nov 12, 2008. Client was late for her appointment due to the fact that she sat in the
admissions/registration department for over an hour. She was very upset and wanted to leave.
Regina Flowers, Community Health Educator for North Lawndale, went and spoke with the
client. Regina sat with the client and assured her that she would support her through the process.
Regina also explained that because of her symptoms that she should wait and not reschedule.
Regina took the client to eat and spent time comforting the client while awaiting her appointment
which took over 4 hours. Regina really supported this client and helped the client to get a
mammogram referral and take the next step. Regina also met with the client for her mammogram
appointment on Nov 20, 2008. The client was very happy to have Regina’s help and thanked
HHL for caring.

            -     Story of HHL Client, Pauline McCaskill, Hotline Coordinator/Research Assistant

These are just a handful of stories and experiences that reflect our program’s spirit and success.
We have completed six months of HHL intervention and believe we have made tremendous
progress toward our goals. Each month, we make more presentations and reach more women.
In this process, we schedule appointments and ensure that women requesting assistance receive
their breast cancer screening.

Our outreach efforts have taught us a great deal and resulted in important community
relationships that will carry us forward in the upcoming years. It is this depth of community
work that will ultimately help make the HHL program sustainable for the future. We will persist
in our efforts track all client services and make revisions as needed throughout the process so
that all women in HP and NL receive mammograms routinely. The lessons we have gained and
described herein from the past six months will guide us in making the next 18 successful.

                                                    Avon Foundation Annual Progress Report 2008-2009
                                                                                            Section 5


As of March 2009, we have spent about close to 95% of the YR01 Budget. Most of the expenses
are from salaries for staff, which supports our dynamic and diverse team and is the essence of
our work. We anticipate spending more on community outreach activities including social
marketing and special events in the upcoming year. In addition, we will have to budget for our
follow-up survey at the end of our intervention phase (Fall 2010) for the Final Evaluation. A
detailed Financial Report of expenses from April 2008-March 2009.

                                                              HELPING HER LIVE PROGRAM FINANCIAL REPORT
                                                                 Avon Foundation, April 2008-March 2009
                                     Apr-08     May-08       Jun-08      Jul-08     Aug-08       Sep-08      Oct-08     Nov-08       Dec-08      Jan-09      Feb-09      Mar-09     Apr08-Mar09
Personnel Subtotal                  26,166.03   28,146.39   26,167.24   36,187.91   35,155.29   29,399.47   36,324.99   35,864.04   34,452.97   27,267.36   35,552.84   41,553.38    392,237.91
Fringe Benefits (+FICA)              1,898.55    1,867.84    1,787.73    2,207.06    2,417.34    2,020.99    2,208.27    2,007.68    2,183.72    2,234.31    2,040.35    2,634.10     25,507.94
Personnel + Fringe Total            28,064.58   30,014.23   27,954.97   38,394.97   37,572.63   31,420.46   38,533.26   37,871.72   36,636.69   29,501.67   37,593.19   44,187.48    417,745.85
Internal Printing                        0.00      32.50         0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00         32.50
Software (SAS)                           0.00        0.00        0.00        0.00        0.00        0.00        0.00    1470.00         0.00        0.00        0.00        0.00       1470.00
Office Supplies                       366.66      134.19       96.40      199.98      146.56      133.66       45.20      236.15      592.74       57.96         0.00      -27.07       1982.43
Other Supplies                      12,495.19   21,025.39    2,366.72     384.95         0.00        0.00      49.99         0.00    1405.48      536.89      312.90      300.00       38877.51
Freight (S&H)                            0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00      53.92       32.97         0.00        0.00         86.89
Other Prof. Services                 8,448.75   17,499.90    5,070.00    5,745.00     200.00         0.00        0.00    2800.00     9235.00     5800.00         0.00    1000.00       55798.65
Meetings/Conferences                     0.00        0.00        0.00        0.00        0.00     269.00         0.00        0.00        0.00     386.41       79.75      -386.41        348.75
External Printing                        0.00        0.00        0.00      67.00         0.00        0.00     229.95      509.60         0.00      67.42       21.01      455.00        1349.98
Maint SVC Contracts                      0.00        0.00        0.00        0.00        0.00        0.00        0.00      12.00         0.00        0.00        0.00        0.00         12.00
Books/Subscriptions                      0.00        0.00        0.00        0.00        4.64        0.00        0.00        0.00        0.00        0.00        0.00        0.00            4.64
Photocopying (IKON)                  1,027.50     462.00         0.00      11.20         0.00      18.91      522.90      130.00       45.00         0.00      62.50      526.50        2806.51
Travel (Employee)                      80.79      154.36         0.00     135.34      295.94      408.25         0.00     288.77       60.00      781.29      331.97      -238.59       2298.12
Messenger Services                       0.00      17.88         0.00      45.96         0.00        0.00      56.71      126.16      314.82       12.50         0.00      40.00         614.03
Promotional Materials                    0.00     490.72        -2.71                                0.00        0.00        0.00        0.00     650.00         0.00        0.00       1138.01
Computers/PC Rentals                  770.00      770.00      220.00     1,850.00    1,200.00    1510.00     1300.00     1300.00     1300.00     1300.00     1300.00     1300.00       14120.00
Misc Donations                           0.00        0.00        0.00        0.00   10,000.00      20.00       20.00         0.00        0.00        0.00   10000.00       71.52       20111.52
Special Events                       2,404.67   -1,415.20        0.00        0.00      18.98         0.00        0.00        0.00     325.00         0.00      23.62         0.00       1357.07
Food Service/Internal                  40.25         0.00        0.00        0.00      49.75         0.00        0.00     342.60         0.00        0.00        0.00        0.00        432.60
Wearing Apparel                      1,000.00        0.00      20.00         0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00       1020.00
Miscellaneous                            0.00      20.00         0.00     400.00       78.50         0.00      33.57         0.00      30.00         0.00        0.00        0.00        562.07
Building Repair                          0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00            0.00
Patient Tracking System                  0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00            0.00
Materials/Brochures                      0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00        0.00            0.00
Postage                                  0.00        0.00        0.00        0.00        0.00        0.00        0.00      15.96       21.10      119.64       37.56         7.07        201.33
                  Direct Total      26,633.81   39,191.74    7,770.41    8,839.43   11,994.37    2359.82     2258.32     7231.24    13383.06     9745.08    12169.31     3048.02     144,624.61
    Indirect/Overhead (8%)           3,665.59    5,536.48    3,014.30    3,778.75    3,965.36    2702.42     3263.33     3608.24     4001.58     3139.74     3981.00     3778.84         44,436
    Total Direct + Indirect         30,299.40   44,728.22   10,784.71   12,618.18   15,959.73    5,062.24    5,521.65   10,839.48   17,384.64   12,884.82   16,150.31    6,826.86    189,060.24
  (Personnel + Direct + Indirect)   58,363.98   74,742.45   38,739.68   51,013.15   53,532.36   36,482.70   44,054.91   48,711.20   54,021.33   42,386.49   53,743.50   51,014.34    606,806.09

                                                                Avon Foundation Annual Progress Report
                                                                                             Section 6


As described above, we have learned a great deal from our assessment and planning phase on
this intervention. The baseline survey, completed in June 2008, informed us that between 60-
70% of women had a mammogram in the past 2 years and about 20-25% of women have no
insurance (except Mexican women, who are twice as likely to be uninsured ~50%). So, despite
lower estimates of routine mammograms, the vast majority of women have a usual source of

We also learned that our interviewers, many of whom are now our Community Health Educators,
were successful in earning the trust of women at random venues in the community. 80% of
women who completed the survey also gave us permission to access their medical records. This
was a remarkable feat and we look forward to sharing the results of our medical abstraction
analyses to examine the accuracy of self-reported mammography use.

Developing the Helping Her Live Program was also an incredible accomplishment by our team
during this past year. We not only created all of its relevant materials but also trained a team of
seven educators who are equipped with the knowledge and skills necessary to raise awareness
about breast health in the community. With its official roll-out in October 2008, we are pleased
with the community’s initial response to HHL and the services we offer. They trust us to
navigate them to services and we will continue to serve them until we achieve our goal.

As we continue to reach some of the most marginalized women in HP and NL, community
leaders and residents have also taught us what work best in reaching women and how to help
ensure that women get their mammograms. For instance, the idea of having women come for
their primary care visit and mammogram on the same day came from a passionate and thoughtful
church pastor. Another instance occurred when we were anecdotally informed by a librarian in
WHP that she was thrilled to attend a Workshop and that it reminded her to get her mammogram.
She encouraged us to follow-up with women who attended the workshops by sending reminder
notices about their mammograms. It is in part because of stories like these that we are currently
in the process of updating our tracking efforts and thinking of new ways of making sure women
get their annual mammogram.

                                                                Avon Foundation Annual Progress Report
                                                                                             Section 6

One noteworthy challenge that we repeatedly face is the issue of screening for younger women.
Our health educators and client stories inform us of several stories about women under 40 years
experiencing breast cancer. We continue to respond by encouraging women to speak with their
primary care providers about clinical breast exams and if symptomatic or with family history,
obtain a mammogram referral.

In the upcoming year, we look forward to expanding our services to reach the entire community,
not just the women who are hardest to reach. We are proud of our success in reaching the most
marginalized women but also understand that if we are to reduce mortality in the community, we
must be able to ensure that all women (those with and without insurance) are getting routine
mammograms. We will work with (and not rely on) existing medical facilities to make sure that
women have access to screening and quality breast health care. To do this, we will have to build
on our existing tracking capabilities to accurately assess the impact of HHL and develop new and
innovative strategies on how to be even more successful.

We hope this Progress Report highlights the tremendous work that has been done by the HHL
staff in the past year. We have sought out advice from Task Force members in planning the
education curriculum for HHL and on how to track our clients more effectively. As we move
into the second year of this Avon funded initiative, we will continue to work locally to ensure all
women get routine breast cancer screening but will also think broadly at the national implications
our initiative will have on improving access to quality breast health services in urban settings.
We hope the lessons we learn will translate into meaningful change, making our Outreach
Navigation program effective and successful. We look forward to sharing such progress with
you next year.

Avon Foundation Annual Progress Report                            APPENDICES
April 2008



       Avon Foundation Annual Progress Report                                                                                         APPENDIX A
       April 2008

                                                          Helping Her Live Organizational Chart

                                                                                                 Steve Whitman, PhD, PI
                                                                                                   Sinai Urban Health

                                                     Ami M. Shah, MPH            Kristi Allgood, MPH            Garth Rauscher, PhD      Jade Dell, MA
                                                      Project Director              Data Analyst,                    Consultant       Research Coordinator
                                                                                  Sinai Avon Grant

DeShuna Dickens, MPH         Teena Francois, MPH                         Giselle Vasquez, MPH             Pauline McCaskill,              Maria Natal
         (75%)               Education Coordinator                       Education Coordinator            Research Assistant/          Administrative Asst.
  Gloria Seals (25%)                                                                                      Hotline Coordinator
Education Coordinators

   Regina Flowers,             Celevia Taylor,             Wanda Rodriguez,              Ana-Rosa Garcia,
  Community Health            Community Health              Community Health             Community Health
     Educator,                    Educator,                     Educator,                    Educator,
   North Lawndale            West Humboldt Park            East Humboldt Park           East Humboldt Park
Avon Foundation Annual Progress Report                                                         APPENDIX B
April 2008

                                Sector Specific Methodology Reports

In all four sectors, Sector Coordinators were responsible for identifying and scheduling venues
where interviewers could complete surveys. They relied on different strategies to complete this
task, each in their unique way.

East Humboldt Park
In East Humboldt Park, the Sector Coordinators (Lolita Lopez and Lisa Stevak 1 ) aimed to
complete 1,000 surveys - 500 with Puerto Rican women and 500 with Mexican women. The
EHP Coordinators first conducted a windshield and walking survey of the community areas.
While walking the streets of the community, they identified venues that appeared to be utilized
by Hispanic/Latina women 40 yrs and over. We also drew from their community contacts and
connections with partner agencies to assist with identifying important venues and providing the
necessary contacts to secure venues. Specifically, the Puerto Rican Cultural Center, Rebaño
Church, Community of Wellness, the Association House, Humboldt Park Breast and Cervical
Cancer Partnership, and Casa Central proved to be important partners in identifying venues and
securing a space for interviewers to administer the survey.

The EHP team trained six women as interviewers (2 FT and 4PT, equivalent of 4 FTE) and
completed over 1,193 surveys (527 with Puerto Rican women, 417 Mexican and 121 Other
Latino = 1065) between March 17-June 23, 2008 (15 weeks), averaging 80 per week. They
collected surveys at 66 different venues. The majority were Community Based Organizations,
followed by churches, park district events, laundromats and schools (categorized as other). Most
successful venues in EHP were the grocery stores, schools, senior facilities and medical facilities
(Table 2B).

North Lawndale
Similarly, Sector Coordinators in North Lawndale (DeShuna Dickens/ Gloria Seals) employed
different methods to determine which venues would be successful for completing 500 surveys in
their community. They started with various websites and local directories of agencies and
organizations - e.g., from foundations, partner agencies resource lists, business directories, etc.
Based on these lists, it was determined that the best venues to try to reach women 40 yrs and
older would be the shopping centers, beauty shops, medical facilities, senior apartments,
churches and other public places like the library. However, it was challenging to secure venues
via phone, identify appropriate person/s to arrange visits, and ultimately schedule date/time to
interview. Thus, they drove around and wrote down the names of all potential business and
venues where surveys could be administered. This proved to be more effective and in the end,
the NL team secured permission to collect data at 25 venues. One of the venues, a church
nearby, was not located within the NL boundaries, but was included because women residing in
NL went there. NL Coordinators soon learned that many residents of NL often went elsewhere
for services and vice versa, that events and/or churches in NL were often attended by former
residents who moved elsewhere. This was not only an important consideration when trying to
 Lisa Stevak and Lolita Lopez joined SUHI in December 2007 as 1.5 FTE Coordinators for the EHP community.
They both left our team and SUHI in the summer of 2008 for personal reasons. We have since hired Giselle
Vasquez as the Sector Coordinator (1 FTE). She joined us in September 2008.

Avon Foundation Annual Progress Report                                                 APPENDIX B
April 2008

identify venues for data collection but also an important implication for the future outreach work
in the community.

As with the other Sectors, data were collected at varying times of the day, in North Lawndale
predominately between 7am-7pm. Surveys scheduling was often based on the venue manager’s
suggestion of when they had the most foot-traffic. Venues for the weekends were mostly the
beauty salons, laundromats, Walgreens and churches.

In sum, the NL team had 4 interviewers and completed 491 surveys in ten weeks (March 17-May 19,
2008) from 25 different venues. Their most successful venues were the medical facilities, Walgreens
or other businesses, senior facilities/apartments, laundromats and local grocery stores.

West Humboldt Park
The WHP Sector Coordinator (Teena Francois) along with WHP Community Partners employed
several strategies to locate venues in their community including neighborhood canvassing,
internet searches and meetings with community stakeholders. An initial list of venues was
drafted based on driving around the community project area and recording addresses of
businesses. Several rounds of canvassing were conducted during the three-months of data
collection and each round focused on different areas of the community. The strength of this
strategy was that it provided a sense of resources available in the area and the diversity of the
land space usage, i.e., distribution of the residential areas, businesses and recreational areas.

Our project community partner, West Humboldt Park Development Council (WHPDC) was an
invaluable resource in prioritizing the initial venue list and expanding upon it. Our primary
contact at WHPDC, Ms. Janece Simmons, identified new contacts and businesses and reached
out to community leaders. She assisted in scheduling venues when she could and helped
introduce the project to WHP community stakeholders. In addition, several of the interviewers
were well-known in the community and they too often identified venues and help schedule time
for data collection based on their prior relationships. A few noteworthy stakeholders that have
continued to be important partners in our implementation phase include Block Club Presidents,
WHP City Councilman Walter Burnett and others. The Block Club Presidents introduced us to
the block clubs, organized entities, which proved to be a way to reach a diverse group of women
in the area compared to other venues with specific patrons. Block clubs proved to be best
method of connecting with home owners and women with higher socioeconomic status. Janece
also introduced us to various community organizations servicing some of the more marginalized
populations in WHP. For instance, we visited the Sanctuary Place, a transitional home for
women (where the Task Force hosted a Town Hall meeting in the summer of 2007), where we
completed many of our baseline surveys. Lastly, Teena also used the internet yellow pages to
conduct mass searches of businesses in the area. This helped enrich the existing list with venue
types like laundromats, grocery stores and medical facilities. This strategy was helpful but not
the most effective.

In summary, we learned that WHP is a mostly residential, resource poor community with respect
to typical venues like grocery stores and businesses. On the one hand, the most common
businesses in the area were gas stations, corner stores and check cashing places, none of which
were appropriate for safe and secure data collection. On the other hand, partnering with CBOs

Avon Foundation Annual Progress Report                                                APPENDIX B
April 2008

helped get the word out about HHL and will continue to be a good vehicle for outreach
navigation. Despite the challenges of findings the obvious venues, WHP has a richness of
resources for poorer residents, which we were able to tap into and thus reach some of the most
marginalized of populations in WHP.

Overall – WHP completed data collection in about 10 weeks with two interviewers – averaging
about 44 completed surveys per week. Most surveys were conducted at community based
organizations, such as the Sanctuary Place, with Parent Groups of Schools, Senior Facilities and
Block Clubs.

Avon Foundation Annual Progress Report                                                            APPENDIX C
April 2008

                            Total Training = 26 Hours

HHL Intervention Goals:
  1. Increase proportion of women who get mammogram
            a. Main Activity – Conduct workshops focusing on key message ‘Get your mammogram’ (if age
  2. Increase proportion of women with an abnormal screening mammogram who receive appropriate follow-up
       treatment and diagnostic tests.
            a. Main Activity –
  3. Improve knowledge, attitudes, and behaviors of women 30yrs+ around breast cancer
            a. Main Activity – Conduct workshops focusing on key message ‘Know your risk factors’, ‘When
               age eligible get mammogram’, ‘Encourage your loved ones to get mammogram if age eligible or
               have increased risk’

WEEK 1: BHE Pre-Training In-Services:
* All Staff
Monday, July 14, 2008
• Sinai Orientation

Tuesday, July 15, 2008
• Sinai Orientation

Wednesday, July 16, 2008
• Introduction to HHL
• Breast Health Pre-test
• Roles/Responsibilities of CHW
• SUHI Orientation
• Meet with Supervisor to go over Sinai Checklist and Expectations
• Office Set-up, etc.
• Independent reading

Thursday, July 17, 2008
• HHL Team Meeting (Time: 9-11a)
• Cont. Office Set-up, etc.
• Independent reading

Friday, July 18, 2008
• Independent reading
• *Breast Cancer, Basic Biology and Definitions (Time: 2:00 – 4:00p – Leader: Dr. Anngell Jones) (Total 2 HRS)

WEEK 2: DAY 1 – 9:00am-3:00 pm (Total 6 HRS)
Learning Objectives – The Basics
By the end of this session, the participant should be able to:
              1. Define what cancer is.
              2. What causes breast cancer?
              3. Understand the risk factors for developing breast cancer.
              4. Understand basic terminology used when talking about breast health and cancer.

      - Previous week review discussion
               o HHL goals and objectives
               o Dr. Jones biology review
               o Independent reading
               o Other Q&A

Avon Foundation Annual Progress Report                                                            APPENDIX C
April 2008

      - Breast Health Lesson Topics:
               o “What is cancer?”, “What is breast cancer?” and/or “My experience with cancer” discussion
               o Types of cancer
               o Breast cancer facts
               o Breast anatomy review
                           Exercise: Role-play ‘Explaining Normal breast vs. Cancer Breast’
               o Types of breast cancer
               o Symptoms/signs of breast cancer
               o Causes of breast cancer
               o How breast cancer diagnosed
               o Consequences of undetected breast cancer??
               o Breast Anatomy (Review of some Biology Topics)
                           ACTIVITY: “Beyond the Shock” video (40-45 minutes)
               o Discuss activity
               o BREAK/LUNCH??
               o Risk Factors and Prevention
      - Wrap up (Questions and/or Comments?)

DAY 2 – 9:00am-3:00 pm (Total 6 HRS)
Learning Objectives: Breast Cancer Screening & Access
By the end of this module, the participant should be able to:
              1. Understand the importance of early detection and screening.
              2. Describe technologies used for the detection of breast cancer.
              3. Explain what happens when a woman gets a mammogram.
              4. Explain the difference between screening and diagnostic mammograms.
              5. Understand screening guidelines for women under 40.
              6. Understand the process of how a woman gets a mammogram.
              7. Understand where women can go locally for mammograms.
         - Review Questions:
                   o Describe some common symptoms for breast cancer.
                   o Can you name (3) risk factors for getting breast cancer?
                   o Is diagnosis with breast cancer a death sentence?
         - Breast Health Lesson Topics:
                   o Understanding mammograms
                              What it is and how it is done?
                              Will it hurt?
                              How does mammography work?
                              Questions to ask?
                              What can affect a mammogram?
                              When should women get mammograms?
                              Accuracy of mammograms
                   o Understanding what happens after the mammogram
                              What to do if the mammogram is normal.
                              What to do if the mammogram is abnormal.
                              What happens if breast cancer is found?
                              How breast cancer is treated.
                              Review of treatment options.
                   o Other technologies for diagnosing breast cancer
                              MRI – Magnetic Resonance Imaging
                              CAT – Computerized Axial Tomography Scans
                              PET – Positron Emission Tomography Scans
                   o ACTIVITY: Demonstration of breast self/clinical exam and/or Radiology Tour
                   o Discuss activity
                   o How can a woman get a mammogram?
                   o Where can women in the local community get a mammogram?
                   o BREAK/LUNCH??

Avon Foundation Annual Progress Report                                                               APPENDIX C
April 2008

        -   Videos/Activity
        -   Wrap up (Questions and/or Comments?)

DAY 3 – 9:00am-3:00 pm (Total 6 HRS)
Learning Objectives: Epidemiology/ Presentation Skills / Review
By the end of this module, the participant should be able to:
              1. Discuss that breast cancer is the leading cause of cancer death among women and disparities.
              2. Understand local trends related to breast cancer.
              3. Identify resources for breast health information.
              4. Understand role as a community health educator.
              5. Understand the importance of building relationships with community members.
              6. Demonstrate some teaching and communication techniques for workshops.
              7. Understand key messages of HHL program.
         - Review Questions:
                   o Name some different technologies used in the diagnosis of breast cancer.
                   o Explain what happens if a woman receives an abnormal mammogram.
         - *Epidemiology and Disparities Discussion (Confirmed: 9:00 – 10:30a – Leader: S. Whitman)
         - Video AND/OR Activity??
         - Discuss video AND/OR activity
         - BREAK/LUNCH??
         - Discussion of the importance of building a relationship with community members
                   o Communication/Teaching/Behavior change strategies
                   o Cultural sensitivity and working with the community
         - Discussion of role as a community health educator – navigator
                   a. Helping women obtain a mammogram / other services
         - Discuss breast health resources for additional information/training etc.
         - Discuss HHL program key messages
         - Review of training topics
         - Case studies/Discussion/ and/or Video
         - Wrap up (Questions and/or Comments?)

DAY 4 – 9:00am-3:30 pm (Total 4 HRS)
Learning Objectives:  Meeting 9-11: Reading Discussion
                          Guest Speaker 1:30-3:30p: Sharon Brown-Elms (Radiologist)
By the end of this module, the participant should be able to:
              1. Understand key messages for women under 40.
              2. Understand the process of getting a mammogram from the radiologist perspective.
         - Review Questions:
                   o What are the key messages for women under 40 according to national guidelines?
                   o What are some of the key roles of the HHL Community Health Educator?
         - Wrap up (Questions and/or Comments?)

DAY 5 – 2:00pm-4:00 pm (Total 2 HRS)
Learning Objectives:        Guest Speaker 2:00-4:00p: Dr. Anngell Jones (Breast Surgeon)
By the end of this module, the participant should be able to:
              1. Understand basic biology and treatment of breast cancer.
         - Wrap up (Questions and/or Comments?)

Avon Foundation Annual Progress Report
April 2008

                                             APPENDIX D


                                   (available as a separate attachment)
Avon Foundation Annual Progress Report
April 2008

                                             APPENDIX E

                                   SELECTED PAGES FROM THE
                           HELPING HER LIVE FACILITATOR GUIDE

                                 (complete guide available upon request)
                  HELPING HER LIVE:
G A I N I N G   C O N T R O L   O F   B R E A S T   C A N C E R

                                               FA C I L I TAT O R

  1. Helping Her Live (HHL) Overview and Workshop Introduction…………………… 2

  1. Helping Her Live (HHL) Breast Health Awareness PowerPoint Presentation………. 4
  2. Helping Her Live (HHL) Workshop Tools………………………………………….. 51
        a. Breast Health Workshop Evaluation Form
        b. Breast Health Questionnaire
        c. Helping Her Live (HHL) Service Request Form

  1. Helping Her Live (HHL) PowerPoint Presentation………………………………….. 57
  2. Helping Her Live (HHL) Workshop Tools…………………………………………. 105
        a. Forma de Evaluación del Taller de Salud del Seno
        b. Cuestionario de Salud del Seno
        c. Peticion para recibir servicios a traves del programa “Apoyandola a Vivir”

Helping Her Live (c) 2008                                                               1
                            Breast Health Awareness


                                                   Generously supported by the Avon Foundation

   Instructor's Notes
                              WELCOME AND INTRODUCTIONS
   •Introduce yourself and if time and not a large crowd you can ask the crowd to
   introduce themselves.
   •Introduce the Helping Her Live program
            •Note: The Helping Her Live Program was developed with the support of the
            Avon Foundation. We are a part of the Sinai Urban Health Institute which is a
            member of Sinai Health System.
                                    [GROUP ACTIVITY NOTES]
            •Make sure all participants have signed in.
            •Make sure that all participants have received and completed a Breast Health
            Questionnaire. Collect all tests before starting presentation.
            •Make sure all participants have an Breast Health Evaluation and a further
            information contact sheet. Explain that you would like everyone to turn those
            in before leaving. If they need to leave early, please leave evaluation on table
            (or other place).
            •Mention the brochure that is a part of their packet and refer to the hotline #.

Helping Her Live (c) 2008                                                                        5
                      Overview of Workshop
                            – Learn basic breast health awareness
                            – Learn the importance of early detection
                              and treatment for breast cancer
                            – Learn what you can do to help yourself,
                              family and friends live
                            – Learn about the Helping Her Live
                              program and how we can work with you
                              to help YOU live
                2                                                        HHL 2008

   Instructor's Notes
   These are some of the topics we will be covering today. Our hope is that from this
   workshop today you will understand:
   •Some basic breast cancer facts, including what breast cancer is and what is not.
   •You will learn the importance of early detection and treatment for breast cancer
   •You will learn what you can do to help yourself, family members and friends live
   and not die from breast cancer.
   •You will learn what our program can do to help you.

Helping Her Live (c) 2008                                                               6
                      Healthy Breast

                17                                                                               HHL 2008

   Instructor's Notes
   •In order to understand breast cancer, it is helpful to have some basic knowledge about the structure
   of the breasts.
                         KNOWS WHAT THE BREAST IS MADE OF?]
   •Breasts come in all shapes and sizes however they are all made up of similar structures. The part of
   the breast which most people are familiar with is the outside. The areola is the darker area of the
   breast surrounding the nipple [show pictures and/or models].
   •The inside of the breast (which most people are not familiar with) houses many things, including fat
   and breast tissues. We all know that milk is made for babies inside the breast, but the main
   structures inside the breast that make the milk are called lobules, which are milk-producing glands.
   They are spread throughout the breast like leaves are spread all over a tree. These lobules are
   connected to the milk-carrying ducts that resemble the branches of a tree. Just as branches come
   together on a tree to form the larger branches so too do the ducts join together to form the major
   ducts. The major ducts then lead to the nipple.
   •Fat cushions these milk-producing structures and connective tissue holds everything together.
   •In addition to the milk-producing gland system, the breasts also contain a large supply of nerves,
   blood vessels, and lymphatic vessels.
   •The blood vessels carry blood throughout the body and nerves help you feel things.
   •The lymphatic system is like a garbage disposal system of the body. Its job is to remove dead cells,
   bacteria, and other harmful agents from the body.
   •Mention that these two things (blood vessels and lymphatic system) are important because that is
   how breast cancer cells can spread to other parts of the body.
   Elk, R. and Morrow, M. Breast Cancer for Dummies. Wiley Publishing Inc. 2003. Indianapolis.

Helping Her Live (c) 2008                                                                                   21
                            Taller de Conciencia de
                                 Salud del Seno

                                                 Generosamente apoyado por la fundacion Avon

   Notas del Instructor:
                              BIENVENIDA E INTRODUCCIONES
   •Introducirme a la audiencia, y si hay tiempo y la audiencia no es muy grande
   pedirle a la audiencia a introducirse.
   •Introducir el programa de “Apoyandola a Vivir”.
            •Nota: Somos un programa que fue desarollado con el apoyo y la
            generosidad de la fundacion Avon y somos parte del sistema de salud de
            Sinai en particular el Instituto de Salud Urbano de Sinai
                                   [ACTIVIDADES DE GRUPO]
            •Asegurar que todos los participantes hayan firmado la lista de asistencia.
            •Asegurar que todos los participantes hayan recibido y completado una pre-
            prueba. Coleccione todas las pruebas antes de la presentacion inicial..
            •Asegurar que todos los participantes tengan una evaluacion y una hoja de
            contacto de informacion adicional. Explique que le gustaria que cada uno de
            los participantes entregaran las hojas de evaluacion y la del contacto de
            informacion adicional. Si ellos tienen que marcharse temprano, por favor
            deje la evaluacion en la mesa (o otro lugar).
            •Mencionar el folleto y dejarles saber que es una parte de su paquete y
            referirse al numero de la linea directa.

Helping Her Live (c) 2008                                                                      58
                                                1999-2003 Indices y el Promedio de
                                                 Mortalidad de Cáncer del Seno en

                                                         60                           BCMR           Chicago
                            Mortality Rates per 100000


                                                         30                                                                23.5

                                                              N. Lawndale   WTHP NHWhite   WTHP NHBlack   WTHP Mexican   WTHP Puerto

                                                                                                                                       HHL 2008

   Notas del Instructor:
   •Para darle un ejemplo de estas disparidades, hemos incluido una grafica que
   muestra los indices de mortalidad de cáncer del seno en Chicago entre 1999-2003,
   la linea roja representa a la indices de mortalidad annualmente en Chicago.
   •Esta grafica muestra que las Puertorriqueñas moriran mas que las mujeres
   Blancas. Las Puertorriquenas no estan muy lejo de pasar la linea del promedia de
   mortalidad de Cancer del Seno entre todas las mujeres en Chicago. Tambien
   vemos que las mujeres Mexicanas mueren menos que las Puertorriqueñas y las

   Illinois Vital Records: Death Certificate Records; 1999-2003

Helping Her Live (c) 2008                                                                                                                         63
                                  Breast Health Workshop Evaluation Form

     We value your honest opinion, so please take a few minutes to complete this evaluation form on your
                                experience at this breast health workshop.

Date:___/___/_____ Health Educator’s Name:_________________              Venue Name:______________
1. How did you hear about this discussion?

2. Did the presentation begin on time?            Yes          No

3. How strongly do you agree or disagree with the following statements:
        a. The topic was interesting.
           Strongly agree      Agree            Neutral             Disagree               Strongly Disagree

        b. The discussion was informative.
           Strongly agree     Agree        Neutral                  Disagree               Strongly Disagree

        c. I felt there was enough time for the discussion.
            Strongly agree      Agree        Neutral                Disagree               Strongly Disagree

4. How would you rate the workshop, overall?
   Excellent   Good        Average                      Fair         Poor

5. How would you rate the instructor(s) knowledge of the material presented today?
   Excellent   Good         Average            Fair          Poor

6. Would you recommend this workshop to others?
   Yes         No         Maybe          If maybe, why or why no?

7. List 3 things you learned from this discussion/presentation:



      Helping Her Live (c) 2008                                                                    53
                                  Breast Health Workshop Evaluation Form
                            Please circle one answer for each of the following questions.

1. Finding cancer early increases a person’s chances of survival.              True         False       Not Sure

2. Cancer involves out of control growth and spread of abnormal cells.         True         False       Not Sure

3. Men do not get breast cancer.                                               True         False       Not Sure

4. Mammograms are the most effective screening method for detecting breast cancer.
                                                                         True               False       Not Sure

5. All women over age 40 need a mammogram every year.                          True         False       Not Sure

6. Growing older decreases the chances of developing breast cancer.            True         False       Not Sure

7. Being overweight or obese increases your chances of developing breast cancer.
                                                                            True            False       Not Sure

8. Breast cancer always has symptoms that affect your body.                    True         False       Not Sure

9. Having a mammogram can cause cancer to spread.                              True         False       Not Sure

10. Drinking too much alcohol (beer, wine, and liquor) increases your chances of developing breast cancer.
                                                                            True        False         Not Sure

Please answer a few questions about yourself.

11. How old are you? Write your age.                                ___________ Years

12. What race or ethnic group best describes you?                     a. African American           b. White
Please check one answer.                                              c. Puerto Rican               d. Mexican
                                                                      c. Other Hispanic

13. Do you have health insurance to pay for medical services?         Yes         No            Not Sure

14. Have you ever had a mammogram?                                    Yes         No            Not Sure

15. In the past 5 years, how many times did you have a mammogram?        0.     1.     2.   3.          4.       5.
                                                                         Never had a mammogram.

16. Was there any breast health information you wanted to learn about that was missing form the presentation?

      Helping Her Live (c) 2008                                                                         54
                                                                                                                 HHL ID_____

                                          HELPING HER LIVE SERVICE REQUEST FORM

   What services would you like assistance with (select all that apply):

    1.       I would like to host a breast health workshop at my church, business, home etc.

Medical Services
    2.       I want to get a mammogram but do not know how to get one.

    3.       I do not have a primary care doctor and would like assistance finding one.

    4.       I have a lump or other problems with my breast and I don’t know what to do.

    5.       I received a referral for a mammogram, but do not know where to go.

    6.       I need help scheduling a diagnostic service because I had an abnormal mammogram.

    7.       I have been diagnosed with breast cancer and need help finding a doctor/ facility to begin treatment.

    8.        I would like to receive a reminder for my annual mammogram appointment.
               (if yes, please include the date of my last mammogram _______/________/__________)

    9.       Other (specify):_____________________________________________________________________

 Please complete the information below so that a Helping Her Live staff member can contact and assist you in obtaining the
                                                services requested above.

Name: ___________________________________________________________________________________________________

Best number to reach I between the hours of 9am to 5pm weekdays:
Phone Number:_________________________________             Alternate Number:____________________________________

                Can we enter the information above in our client database?    ______ YES           ______ NO

If you responded YES to the question above, please read and sign the Authorization form on the back of this page.

                                     THANK YOU FOR YOUR TIME AND PARTICIPATION!

                                                      HELPING HER LIVE
         Helping Her Live (c) 2008                                                                                   55
Avon Foundation Annual Progress Report
April 2008

                                             APPENDIX F

                                   SELECTED PAGES FROM THE
                             HELPING HER LIVE RESOURCE GUIDE

                                 (complete guide available upon request)
  Helping Her Live

    Resource Guide

Ensuring that ALL women in Humboldt
Park and North Lawndale have access to
       quality breast health care.
                             Table of Contents


     HHL Hotline and Resource Guide Summary…………………………………….

     How to Use This Guide ………………………………………………………………….

     Intake Form(s)………………………………………………………………………………

Screening Facilities

     Primary Care Clinics…………………………………………………………………………

     Screening Mammography Facilities……………………………………………………

Financial Eligibility Assessments for Low/ No Cost Medical Facilities

     Stand Against Cancer (SAC)…………………………………………………………….

     Illinois Breast and Cervical Cancer Program (IBCCP)…………………………

     Sliding Fee Scale Assessment Primary Care Clinics…………………………….

Diagnostic and Treatment Facilities


     Treatment Act Eligibility………………………………………………………………..

Breast Cancer Support Services

     Organizational Contact Information……………………………………………….

     Breast Cancer Related Literature……………………………………………………
                        How to Use the HHL Resource Guide

The Helping Her Live Resource Guide contains clinical and social support services for
women in the Humboldt Park and North Lawndale communities. This book is meant to be
utilized by HHL staff to provide navigational assistance to women who may request services
through the HHL Hotline or HHL Breast Health Workshops. The service requests may range
from where to get a mammogram to wanting to host a HHL breast health presentation.

The following is a step by step guide to assist staff in meeting the needs of HHL clients in an
efficient and compassionate manner. The resource guide is divided into four overarching
service areas including: Primary Care Facilities, Diagnostic and Treatment Facilities, Social
Support Services and HHL Breast Health Education Information. A detailed description of
the sections and the chapters within are provided below. Following the descriptions is a
protocol specifying how to handle different types of calls including how to complete the
appropriate documentation.

                                   Chapter Summaries

Chapter I. Screening Facilities

This chapter contains a list of primary care clinics and screening mammography facilities.
The first page of the chapter has a map of the facilities. In the remaining pages of the
chapter, the facilities are listed by zip code and can be identified from the map by a unique
HHL-ID. Information for each clinic includes the following but is not limited to: address,
phone, hours of operation and languages spoken.
Chapter II. Financial Eligibility Assessments for Low / No Cost Medical

This chapter outlines financial eligibility guidelines for the free state screening programs,
Stand Against Cancer and the Illinois Breast and Cervical Cancer Program. In

addition, the chapter contains information regarding sliding fee assessment for women
who are not eligible for either of the state programs.

Chapter III. Diagnostic and Treatment Facilities

This chapter gives basic information on hospital and other medical facilities that perform
diagnostic procedures and varying types of breast cancer treatment. These facilities are
listed by zip code. The first page of this chapter also contains a map with a unique HHL-ID
for each facility. Included in this chapter are the state and federal laws explaining the
treatment act that provides financial assistance for US citizens who are uninsured and are
unable to get treatment following a breast cancer diagnosis. Information regarding charity
care for uninsured and underinsured patients can also be found within this chapter.

Chapter IV. Support Services for Breast Cancer Patients

This chapter covers organizations that provide support services for women who have been
diagnosed with breast cancer. In this chapter you will find literature, videos and audio
tapes available for clients to rent and support groups for survivors and family. This chapter
also includes services for medical wigs and prosthesis. All services can be found by zip code
and language preference.
                                   Hotline Services

Helping Her Live Hotline 1-877-HER LIF 2 (1-877-437-5432)

The purpose of the Helping Her Live Hotline is to provide timely and accurate navigation
of breast cancer screening and services for all women in the Humboldt Park and North
Lawndale communities. We hope that this intervention will be successful in ensuring that
all women receive answers to the questions they have and the care they deserve.

There are many breast cancer hotlines in the area, how is the Helping Her
Live Hotline different?
Currently, there are numerous hotlines that provide an array of breast health services for
women in the metropolitan Chicago area. For instance, the Illinois Breast and Cervical
Cancer and Stand Against Cancer programs have hotlines to connect women throughout
Illinois to medical services for breast cancer screening, diagnosis and treatment. While
other hotlines like the American Cancer Society (ACS) and the Breast Cancer Network of
Strength (formerly known as Y-ME of Illinois) provide breast health education and support
services for breast cancer patients locally and nationally.

The Helping Her Live Hotline is specific to women living near or in Humboldt Park and
North Lawndale. In calling 877-HER LIF 2, we will assist women in finding a medical
home; obtaining a mammogram; receiving timely follow up for abnormal exams; obtaining
financial assistance for all breast health services; providing transportation; finding
appropriate social support and assisting women in navigating the system. HHL Hotline is
unique in that our staff will provide individualized assistance to meet the specific needs of
the women by reducing their barriers to quality breast health information and medical care
in our targeted communities. In addition, the HHL hotline staff will continue to follow up
with clients until all their needs have been met.

Who should call HHL?
Anyone living in the Humboldt Park or North Lawndale areas looking for medical breast
health care and/ or social support services for breast cancer should call this number. We
will assist women living in these communities in accessing services on the west side of

Who should get mammogram?
A mammogram is a simple X-ray test to help the doctor look for changes in your breast
that could lead to cancer. It is recommended that all women 40 years and over receive a
mammogram annually. If you do not know where to go or how to get a mammogram,
please call 1-877-LET LIV2. We will help women obtain a referral and then schedule an
appointment to get a mammogram.

What to expect?
   HHL Client Intake Form                                                                    HHL-ID:_____

Name:______________________________________________                    D.O.B. ____ /____ /____

Address:____________________________________________                   City____________ ST.____ Zip______

Phone:_______________________                                          Email:___________________________

Is this your first time requesting services from HHL? Yes____          No ____

Initial Date of Contact: ____ /____ /____        Client Origin: ___ Hotline   ___ Workshop    ___ Com. Events

If the client originated from a com event or workshop, name of the venue?______________________________

If the client called the Hotline, how did she get the number?_________________________
Do you give the HHL project permission to…
       contact them for future follow up regarding your requested services?
       enter your information into a client database?
       view patient records regarding breast cancer screening, diagnosis and treatment?

                                                Requested Services(s):
____ Breast Health Info         ____Breast Health Workshop      ____Com. Events      ____ Primary Care Services

____ Mammography Services ____ Annual Reminder, Date of Last Mammogram____ / ____ / ____

____Diagnostic Services         ____Treatment Services    Other requests____________________________

                            Additional Information Needed for Medical Requests:
Age_____                  Insurance Type: ___ Uninsured ___ Medicaid ___ Medicare ___ Private Insurance

If the client is uninsured, ask the following questions for family size and house hold income:
Family Size ____          What is the client’s household income?
                          ____Below 26,000       ____ 26,000- 35,000    ____35,001- 44,000   ____44,001- 53,000
                          ____ 53,001- 62,000     ____62,001- 71,000   ____71,001- 80,000    ____80,001- 89,000
Is the client is eligible for      SAC       IBCCP?
                                         Additional Client Information:
Is the client of Hispanic or Latino Descent? ____ Yes ____ No
        If Yes, Country of Origin: ____ Mexican          ____ Puerto Rican    ____ Other Hispanic
        If No, what is the client’s self identified race? ____ Black   ____White    _____Other

What is the client’s primary language? ____ English ____ Spanish ____ Other

What is the client’s preferred method of contact? ____ Phone ____ Mail ____Email


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       NARRAGANSETT                                    25                                                                                                                                                                KE STO

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                                     ND                                                                                                                               28                                                                                         C

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                                                                         32                        34                                                                                                               14                     E
                                                                                                                                              GR DIVISION                                       9

                                                                                                                               CENTRAL PARK
                                                                                                                                                  D                                                                          10
                                                                                                                                                                                                                                             13 8
                                                                              31                                                                 33                                                                                                                        CH


                               27                      KINZIE                                KINZIE

      Oak Park                                                                                                                                                                                                                           5
                                                  26                                                                                                                                                                     7




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                                                                 VAN BUREN                          OB EISENHOWER                                                                                                                                       HARRISON

                                       AV IKE




                                                       ROOS EVELT                                                        16            CENTRAL PARK
                                                                                                                          21                            16TH                                         16TH                                                2 3             16T

                                                                                                                                                                                                      CULLERTON CULLERTON                                                CU

                                                                                                                                                                      18                                  4
                                                                                                                                17                                                                                AN
      Berwyn                                      Cicero                                                                                                              20                                  BL
                                                                                                                                                      26TH                                                                                                          O
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                                                                                     31ST                                                                                                                     DAME

60608                                                                                                                   60623 cont.
1.   KLING PROFESSIONAL CENTER                                                                                          21. WESTSIDE FAMILY HEALTH CENTER
3.   PILSEN FAMILY HEALTH CENTER                                                                                        60624
4.   PLAZA MEDICAL CENTER                                                                                               22. LAWNDALE CHRISTIAN HEALTH CENTER
                                                                                                                        23. MADISON MEDICAL CENTER
5. MILE SQUARE HEALTH CENTER                                                                                            60639
6. MILE SQUARE HEALTH CENTER                                                                                            24. AUSTIN FAMILY HEALTH CENTER
7. WARREN FAMILY HEALTH CENTER                                                                                          25. PCC COMMUNITY WELLNESS

60622                                                                                                                   60644
8. ERIE FAMILY HEALTH CENTER                                                                                            26. CIRCLE FAMILY CARE HEALTH CENTER
9. NORWEGIAN AMERICAN HOSPITAL FAMILY MEDICINE                                                                          27. PCC AUSTIN FAMILY HEALTH CENTER
11. ST. ELIZABETH MEDICAL CENTER                                                                                        60647
                                                                                                                        28. ARMITAGE FAMILY HEALTH CENTER
                                                                                                                        29. ERIE HUMBOLDT PARK FAMILY HEALTH CENTER
                                                                                                                        30. HUMBOLDT PARK FAMILY HEALTH CENTER

60623                                                                                                                   60651
                                                                                                                        31. AUSTIN COOK COUNTY COMMUNITY HEALTH CENTER
                                                                                                                        32. CIRCLE FAMILY CARE
                                                                                                                        33. LOUISE LANDAU HEALTH CENTER
                                                                                                                        34. WEST DIVISION FAMILY HEALTH CENTER
       Helping Her Live Hotline         1 877 - HER LIF 2
                     PRIMARY CARE PHYSICIANS



2720 W. 15TH Street Chicago, IL 60608

Phone:                Alternate Number:          Fax Number:
(773) 257-6730        N/A                        N/A

Type of Insurance Accepted:
Medicaid, Medicare, Private Insurance

Available Financial Assistance Programs:

Hours of Operation:
Monday 8-5:30pm Tuesday & Friday 8-5pm
Wednesday – Thursday 8-6:30pm Saturday 8-12pm

Special Services Available: Wheelchair Accessible

Languages Spoken by Clinic Staff:
English, Spanish

Accessible by Public Transportation: Yes

Contact Person:
Mari Ortiz

Alternate Contact:
Maria Fragoso

Avon Foundation Annual Progress Report                                                                                                                   APPENDIX G
April 2008

                                                LIST OF MEDIA REFERENCES AND PUBLICATIONS

 Date         Sector   Type              Media Source                  Article / News Title                  Audience                   Resulted In

 3/20/2008    NL/HP    Newspaper    Lawndale Bilingual News   Helping Her Live *                       General Public          Distribution in NL/HP
                                                                                                                               3 people called needed
                                    CAN TV Channel 21                                                  Chicago CAN TV          assistance in obtaining medical
 6/9/2008     WHP      TV           Alderman Burnett Show     HHL & Breast Cancer Disparities          Viewers                 care and all were helped
                                    CAN TV Channel 21,        Breast Cancer Disparities, HHL, Sinai
                                    segment of the BEEP       Navigation & Chicago Metro Breast        Chicago CAN TV
 6/13/2008    WHP      TV           Entrepreneurial Expo      Cancer Task Force                        Viewers
                                                              Mt. Sinai Hospital expands outreach
 11/13/2008   WHP      Newspaper    Austin Weekly News        efforts *                                WHP/NL Residents
              WHP &                                                                                    Humboldt Park library   Brought women to the HHL
 12/1/2008     EHP     Website      Chicago Public Library    Breast Health Workshop Promotion         patrons                 workshop
                                                              Sinai Urban Health Institute presents
                                                              “Helping Her Live: Gaining Control of    Hispanic/Latino
 2/1/2009      EHP     Newspaper    La Voz                    Breast Cancer” *                         Communities             A Hotline phone call/new client
              WHP &                                           HHL Breast Health Workshop               Humboldt Park library   Women attended the HHL
 2/1/2009      EHP     Website      Chicago Public Library    Promotion                                patrons                 workshop
                                                              HHL Breast Health Workshop               West Chicago library    Women attended the HHL
 2/1/2009     WHP      Website      Chicago Public Library    Promotion                                patrons                 workshop
                                                              HHL Breast Health Workshop               North Austin library    Women attended the HHL
 2/1/2009     WHP      Website      Chicago Public Library    Promotion                                patrons                 workshop
                       Church       Carey Tercentenary        Health Corner: Update on women                                   Report back on Feb 14th
 2/14/2009     NL      Newsletter   A.M.E. Church             getting mammograms on Feb 14 *           NL Residents            Mammogram Visit to Sinai
 2/25/2009                          The Voice                 North Austin Library Presenting Breast                           Brought women to the HHL
 3/18/2009    WHP      Newspaper    (Garfield/Lawndale)       Health Seminars *                        WHP/NL Residents        workshop
                                                              Breast Health Awareness Workshops                                Brought women to the HHL
 2/26/2009    WHP      Newspaper    Austin Weekly             Announcement *                           WHP/NL Residents        workshop
                                    West Humboldt Park
                                    Development Corp.         Publicity for HHL Breast Health                                  Distributed to over 500
 3/3/2009     WHP      Newsletter   News                      Workshops                                WHP Residents           households

* Copies of Media Clips Attached

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