Asian American Network for Cancer Awareness, Research,and Training (AANCART): Fifth Asian American Cancer

Control AcademySupplement to Cancer

New York AANCARTUsing Participatory Research to Address the Health Needs of South Asian andKorean Americans in New York City

Nadia Islam, M.A.1

Simona C. Kwon, Dr.Ph., M.P.H.2

Habibul Ahsan, M.D., M.P.H.3

Ruby T. Senie, Ph.D.3

1 Center for the Study of Asian American Health,New York University School of Medicine, New York,New York.

2 Department of Health, Behavior, and Society,Johns Hopkins University, Bloomberg School ofPublic Health, Baltimore, Maryland.

3 Department of Epidemiology, Mailman School ofPublic Health, Columbia University, New York, NewYork.

Presented at Asian American Network for CancerAwareness, Research, and Training (AANCART):Fifth Asian American Cancer Control Academy,Sacramento, California, October 22–23, 2004.

The authors thank their community partners, NewYork Taxi Workers Alliance and the Korean Com-munity Services of New York, Inc., for supportingthe project, respectively: Bhairavi Desai, Director,and Seongho Kim, M.S.W., Public Health ProgramDirector. In addition, the authors acknowledge allvolunteers and research interns, including theHealth Needs Assessment interviewers; the To-bacco Not Tolerated peer leaders; Grace Chung;Eunpa Chae, M.P.H.; Heejung Roh; Navneet Kathu-ria, M.D., M.P.H.; Anu Gupta, M.D.; Kavita Mari-walla, M.D.; Marguerite Ro, Dr.P.H.; and NaseemZojwalla, M.D.

Address for reprints: Ruby T. Senie, Ph.D., Depart-ment of Epidemiology, Mailman School of PublicHealth, Columbia University, 722 West 168th St.,Room 732, New York, NY 10032; Fax: (212) 305-9413; E-mail: rts15@columbia.edu

Received June 2, 2005; accepted July 25, 2005.

Since its inception in April 2000, the New York Asian American Network for Cancer

Awareness, Research, and Training (NY AANCART) has conducted cancer control

education, research, and infrastructure-building activities in collaboration with the

agenda of the national AANCART project, one of the Special Population Networks

funded by the National Cancer Institute. In New York, the AANCART program was

developed based on the principles of community-based participatory research

(CBPR), a research approach that is centered on community strengths and issues and

that engages the community in the research process. NY AANCART has been dedi-

cated to developing leadership within and collaboration with community-based or-

ganizations (CBOs) to address the needs of medically underserved New York Asian-

American populations. In particular, NY AANCART has worked with CBOs to develop

and implement a diverse public health agenda that addresses the concerns of the

communities that are served by these organizations. Using case studies from two

community-based partnerships that were developed by NY AANCART, the current

report describes how the principles of CBPR were applied in two rapidly growing

Asian-American communities in New York City. Cancer 2005;104(12 Suppl):2931–6.

© 2005 American Cancer Society.

KEYWORDS: Asian American Network for Cancer Awareness, Research, and Train-ing; cancer; South Asian; Korean; community-based participatory research.

S ince its inception in April 2000, the New York Asian AmericanNetwork for Cancer Awareness, Research, and Training (NY AAN-

CART) has been conducting cancer control education, research, andinfrastructure-building activities in collaboration with the agenda ofthe national AANCART project, one of the Special Population Net-works funded by the National Cancer Institute. Based on the U.S.Census of 2000, the Asian community now comprises � 10% of thetotal New York City population, providing an appropriate setting forinclusion in the national AANCART program to reduce cancer dispar-ities.1

In New York, the AANCART program was developed based on theprinciples of community-based participatory research (CBPR), whichis a research approach that centers on community strengths andissues and that explicitly engages the community in the researchprocess.2 Therefore, NY AANCART has been dedicated to developingleadership within and collaboration with community-based organi-zations (CBOs) to address the needs of the medically underservedNew York Asian American populations. In particular, NY AANCART

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© 2005 American Cancer SocietyDOI 10.1002/cncr.21507Published online 24 October 2005 in Wiley InterScience (www.interscience.wiley.com).

has partnered with CBOs to develop and implement adiverse public health agenda to address the concernsof the communities they serve.

The 2000 U.S. Census reported tremendous pop-ulation growth in the South Asian and Korean com-munities within New York City, the second and thirdlargest Asian subpopulations, respectively. ChineseAmericans are the largest Asian American group inNew York City. South Asian Americans, which includeindividuals from India, Bangladesh, Pakistan, SriLanka, and parts of the Caribbean, have experiencedthe largest growth of any Asian subpopulation, in-creasing by � 89% from 113,857 in 1990 to 216,179 in2000. Particular subpopulations within the SouthAsian community, such as the Bangladeshi popula-tion, have experienced even greater growth, increasingby � 286% in the last decade. Korean Americans, thethird largest Asian subgroup in New York City, grew by24%, from 69,718 in 1990 to 86,473 in 2000.1 WithinNew York City, the Borough of Queens has the highestpercentage of Asian Americans, with � 50% of theNew York City Asian population residing in this bor-ough. Given the rapid population growth of the Ko-rean and South Asian communities as well as theirsignificant presence in Queens County, NY AANCARThas focused its efforts and resources in these commu-nities to develop a sustainable infrastructure for pub-lic health research.

In developing a set of best practices, NY AANCARThas applied the principles of CBPR to working in theSouth Asian and Korean communities in New YorkCity. These best practices, according to Israel andcolleagues, include engaging in research that is 1)participatory; 2) cooperative, engaging communitymembers and researchers in a joint process in whichboth contribute equally; 3) a colearning process forresearchers and community members; 4) a method forsystems development and local community capacitybuilding; 5) an empowering process for communitymembers; and 6) a way to balance research and ac-tion.3 Using case studies from two community-basedpartnerships that were developed by NY AANCART,this report describes how the principles of CBPR wereapplied in two rapidly growing Asian American com-munities in New York City.

Defining the Problem and Developing a ResearchInfrastructureNY AANCART initiated outreach to the South Asianand Korean communities in New York City through aseries of round-table discussions with many of theCBOs that serve these populations. The objectives ofthese meetings were to introduce the goals and mis-sion of NY AANCART and to receive feedback and

initial impressions from community leaders regardingthe public health research needs of their communities.Discussions with South Asian and Korean communityleaders repeatedly identified the lack of available sci-entific data documenting the diverse health needs oftheir rapidly growing communities. Advocates advisedthe need to collect baseline data on access to healthservices, preventive health screening behavior, andhealth beliefs among members of their communitiesbefore building a research infrastructure. Therefore,the first project that was initiated by NY AANCART wasa health needs assessment survey conducted in theSouth Asian and Korean communities.

The survey was developed by using questionsfrom the National Health Interview Survey and theBehavioral Risk Factor Surveillance Survey. The surveywas developed and conducted by NY AANCART inpartnership with various organizations whose mem-berships included underserved South Asian and Ko-rean Americans.

Case Study 1: Partnership with New York City TaxiDriversBecause taxi drivers represent a workforce of � 40,000individuals, approximately 70% of whom are of South-Asian origin, this group was targeted for inclusion inthe survey to capture the health needs of South Asiansin New York City. The NY AANCART team sought outa relationship with the New York Taxi Workers Alli-ance (NYTWA), a group that advocates for the eco-nomic and social rights of drivers, because of its com-mitment to improve the working conditions of driversin New York City.

The existing agenda of the NYTWA included theobjectives of assessing and meeting the health needsof their drivers. For years, the organization had beeninterested in pursuing a health campaign but lackedthe resources and infrastructure to do so. Some of theprojects the NYTWA was interested in pursuing in-cluded 1) conducting a health needs assessment todocument drivers health concerns, 2) drafting a peti-tion to the Taxi and Limousine Commission (TLC) (theregulatory body for this workforce) and to private in-dustries for driver health benefits, and 3) developing ahealth campaign that would comprehensively addressthe myriad health issues that drivers face. After learn-ing of NTYWA’s objectives, the NY AANCART teamarranged a meeting with the NYTWA in December2000 to propose expanding the health needs assess-ment survey in the South-Asian community to includetaxi drivers. Because the NYTWA had been interestedin conducting a survey of their drivers, the proposedassessment survey afforded them the opportunity torealize their objective.

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Applying the principles of CBPRDuring the next 6 months, in regularly scheduled,collaborative meetings between the NY AANCART andNYTWA, many issues were addressed to define themechanics and time frame of the survey. For example,the researchers initially had considered surveyingmembers of the NYTWA by telephone, through homevisits, or by mailed surveys. However, the NYTWA staffnoted that the long working hours and hectic sched-ules of the drivers would prohibit the time commit-ment necessary to complete a lengthy survey. Instead,the NYTWA advised the research staff to reach out totaxi drivers at airport holding lots, where drivers oftenwait more than an hour for incoming flights. Ourcollaboration with NYTWA facilitated the process andhelped the team gain bureaucratic access in thisunique setting.

The next phase of the partnership involved theactual collection of data. This stage was comprised ofseveral steps. First, the health needs assessment sur-vey created by the NY AANCART team was modified toincorporate the addition of questions exploring NYT-WA’s issues of concern. For example, NYTWA wasinterested in documenting specific occupationalhealth issues, such as the number of breaks driverswere able to take per shift. Questions were createdwith NYTWA’s assistance and then modified as nec-essary based on pilot testing of surveys with 30 drivers.Surveys were then administered to drivers waiting inNew York City airport holding lots during the summerof 2001. AANCART-trained interviewers who were flu-ent in several South Asian languages conducted face-to-face interviews with drivers. Surveys were con-ducted with 175 drivers in English, Hindi, Punjabi,Bengali, and Urdu.

Finally, in terms of analysis, AANCART took theresponsibility for handling the data. All analyses wereconducted with NYTWA’s input. Preliminary resultsfrom the analyses confirmed the NYTWA’s predictionthat their drivers had very poor access to health care.Eighty percent of drivers in the sample were unin-sured, 40% did not have a usual source of care, 22%had experienced a barrier to obtaining care in the lastyear when care was needed, and 25% had never re-ceived a routine check-up. In terms of cancer-relatedissues, drivers also faced various barriers. For exam-ple, 60% of drivers had not completed their hepatitis Bvaccination series, although the majority of drivershad immigrated from medium-risk to high-risk areasof the world.

After our preliminary analyses of the data, theNYTWA met with the NY AANCART research team todiscuss the evolution of their health campaign. With

the assistance of NY AANCART, NYTWA decided toembark on a three-pronged strategy to increase accessto health care for New York City drivers. The campaignconsists of direct service delivery, advocacy, and mo-bilization to insure drivers.

Direct service deliveryIn July 2002, NY AANCART worked with NYTWA tocohost the first-ever health fair for New York City taxidrivers. The fair was held at an airport holding lot toreach the maximum number of drivers. More than 20hospitals, health clinics, and social service agenciesparticipated and served more than 500 drivers, pro-viding health screenings, health insurance enrollment,and educational outreach. More than 15 differenttypes of screenings were provided, including bloodpressure, cholesterol, diabetes, hepatitis B, and tuber-culosis. In addition, educational and referral informa-tion on a variety of health-related issues was provided,including colorectal and prostate cancer screeningand sexually transmitted diseases. NY AANCART alsoprovided 200 free hepatitis B screenings. All driverswho participated in the hepatitis B screening werereferred to follow-up care or free hepatitis B vaccina-tions by the New York City Department of Health andMental Hygiene community clinics. The overall re-sponse to the fair was positive, with some driverscommenting that this was the first time since theycame to United States that they had received anymedical attention. Because of the success of the fair,the NYTWA has decided to host health fair events on aregular basis and actively is pursuing funding to im-plement such activities.

AdvocacyIn December 2001, NY AANCART researchers, usingdata from the survey, testified on behalf of the NYTWAon the possibility of using a fare increase to funddriver health benefits at a hearing of the TLC. Accord-ing to the NYTWA, having NY AANCART researcherspresent data on the health access needs and barriersfaced by taxi drivers increased their legitimacy andcredibility in the eyes of the TLC and made their futurecampaigns more successful. NY AANCART currently isworking with the NYTWA on developing a report ondrivers’ health status using the findings from thehealth needs assessment to support future advocacyefforts.

Mobilization to insure driversThe NYTWA has developed a “two-tier” plan to insureNew York City drivers. First, the organization has beenenrolling drivers who qualify into government-spon-sored health programs. In New York State, these plans

Best Practices: New York/Islam et al. 2933

include Medicaid, Medicare, and Family Health Plus(a state-sponsored insurance option that is restrictedto United States residents within a particular incomecap). The NYTWA also has enrolled drivers into gov-ernment plans, partnering with CBOs that offer enroll-ment to qualified individuals. NY AANCART has as-sisted in forging relationships between the NYTWAand these community organizations. The second as-pect of the health insurance mobilization plan was todevelop a low-cost health plan for New York Citydrivers. The NYTWA plans to partner with a network ofcommunity-based clinics and hospitals in New YorkCity to provide services to drivers at a discounted rate.NY AANCART is assisting with the development ofthese partnerships.

National recognition of a successful partnershipIn July 2004, the National Cancer Institute’s Center toReduce Cancer Health Disparities enabled each Spe-cial Population Network to identify an outstandinguniversity-community collaboration. The relationshipbetween NY AANCART and NYTWA was selected bythe national AANCART research team to receive thisspecial award.

Case Study 2: Partnership to Address TobaccoAdvertising in the Korean-American Community inQueens, New York CityAnother example of NY AANCART’s adherence to theprinciples of CBPR is its partnership to address to-bacco advertising in the Korean-American commu-nity. During the course of the round-table meetingswith Korean community leaders, decision-makers atCBOs, and health professionals, many importantproblems and needs were discussed. However, oneissue was articulated repeatedly by the community:the high rate of cigarette use in New York City’s im-migrant Korean community and the possible influ-ence on the uptake of smoking by their youth. Despitethe federal tobacco settlement, which provided in-creased funding for tobacco education and cessationprograms, research findings confirm that tobacco useamong Asian Americans, and Korean Americans inparticular, continues to be a growing public healthchallenge. Although data from the 1997 NationalHealth Interview Survey (NHIS) reported that Asianadults were the least likely ethnic group to smoke(16.9%),4 significant subgroup differences were found,indicating that a significantly greater percentage ofKoreans (22.5%) were current smokers compared withChinese (10%) or Asian Indian (8.7%) adults.5 Nationaldata sources like the NHIS may not be applicable toimmigrant Asian communities, because data collec-tion generally is conducted in English, limiting the

study sample to a more highly acculturated groupthan the general Asian population. Community-basedsample population studies conducted in Korean haverevealed higher prevalence rates ranging from 26% to39% of current smoking among Korean men living inthe U.S.6 – 8

To address the community’s concern, in the sum-mer of 2001, NY AANCART, in collaboration with ourcommunity partner, the Korean Community Servicesof Metropolitan New York, Inc. (KCS), created a Ko-rean American teen tobacco peer-education projectentitled Tobacco Not Tolerated (TNT). The programenrolled a core group of eight high school teens fromthe Korean community who were educated and em-powered to serve as peer leaders. Their responsibilitieswere to teach their younger community peers aboutthe adverse health effects of tobacco as well as theimpact of advertising and marketing tools used bytobacco companies to entice Korean youth to beginsmoking. NY AANCART provided the technical andfinancial assistance, such as educating the peer lead-ers and assisting with their educational workshop cur-riculum. KCS shared in planning, recruiting teen par-ticipants, facilitating interviews with key informants todiscuss the feasibility of the program, evaluating thesuccess of the program, and disseminating the results.

After the education phase of the project, groupdiscussions were held with peer leaders directly, togive them an opportunity to express their concernsabout tobacco use in their neighborhoods and togather information about the educational curriculumto be devised by the peer leaders. Feedback from peerleaders guided changes in the focus of the interven-tion. NY AANCART achieved a deeper understandingof the importance of the neighborhood needs from theperspective of young individuals as a result of thesediscussions. The peer leaders believed that more of animpact could be achieved in their community by ap-plying the information they had gained to create socialchanges to their environment. In particular, they wereinterested in exploring the use of tobacco advertisingretail establishments in their predominately Koreanresidential neighborhoods in Queens.

Through published studies, the TNT memberslearned that more stores with exterior tobacco adver-tising have been located in Asian communities than inHispanic, African-American, or white neighbor-hoods.9 –12 In addition, advertisements both insideand outside stores were significantly less likely to havehealth warnings in these neighborhoods than in whiteneighborhoods.9 –11 Industry reports indicate thatthree out of four teenagers visit a convenience store atleast once per week, where they are exposed to highlevels of tobacco marketing.13,14 There is growing ev-

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idence that youth—who make up the majority of newsmokers—are more responsive to such marketing thanadults.15 A recent study found that teens smoked thebrand that took up the most space in conveniencestores nearest their schools and that there was a strongassociation between point-of-purchase (POP) adver-tising with the choice of brand among teenage smok-ers.16

Applying the principles of CBPRArmed with this information, members of our peerleaders began to note the predominance of tobaccoadvertisements in their own neighborhood green gro-cers and convenience stores. They expressed this as areal issue of concern that needed to be addressed intheir community and their neighborhoods.

Adhering to the principles of CBPR, in the fall of2002, the NY AANCART team worked with the TNTmembers to develop a successful proposal to docu-ment and raise community awareness regarding theamount of POP tobacco advertisements in the pre-dominately Asian neighborhoods in Queens in whichour peer leaders lived. The project, in which the teensplayed key roles in all aspects of the program devel-opment, planning, and implementation, was com-posed of three phases: documenting the amount oftobacco advertising in community retail establish-ments using the Operation Storefront survey17; reduc-ing exposure to advertisements in stores through aposter-exchange component, in which a tobacco ad-vertisement would be taken down in exchange for ahealthy living poster; and, finally, conducting a mediacampaign to raise community awareness and to influ-ence policy change.

Documenting the problemThe TNT members completed the Operation Store-front survey in 2002 and found that a greater percent-age of exterior (18% more) and interior (7% more)tobacco advertisements were found in their Queensneighborhoods compared with findings from a na-tional study that was conducted in 1999.18

Short-term outcomesClose to 30% of the 161 targeted neighborhood storesparticipated in the poster-exchange component,which decreased the amount of visible tobacco adver-tising in the community. At the end of the project, theTNT members reported that they felt like they hadmade a true change in their community. One memberorchestrated a poster/advertisement exchange in herown neighborhood in which the storeowner tookdown a tobacco advertisement on his glass door inexchange for an American Cancer Society Jackie Chan

“Strike Back Against Tobacco” poster. When she walksby the store daily on her way to school, she notes,“Every time I pass it I think, ‘I did that.’ It makes mefeel proud.”

Long-term outcomesIn early 2003, the TNT members and NY AANCARTpublished a report of the project findings that wasdistributed to the Health Commissioner and the NewYork City Department of Health and Mental Hygiene,members of the New York City Council, communityleaders, CBOs, and local small business associations.At the end of the year, NY AANCART expanded theproject with another grant award to develop a list ofcommunity-imposed, voluntary restrictions on theamount and type of POP tobacco advertisements dis-played in community stores. These restrictions wouldbe enforced through written support by CBOs, com-munity members, and local small business associa-tions. Finally, in the summer of 2004, the New YorkCity Council member who represents the largest sur-veyed district in Queens sponsored a ceremonious billto prohibit POP tobacco advertising that targets chil-dren and assembled an oversight hearing in Decem-ber 2004 to explore the issue further. At the conclusionof the hearing, the chairman of the Youth ServicesCommittee proposed working on a resolution appeal-ing to the federal government to allow cities and statesto regulate community tobacco advertising.

CONCLUSIONIn conclusion, using a CBPR approach involves

including community members in all phases of theresearch process. The relationship formed is that ofequal partners working together to design projects toenhance understanding of issues that affect the com-munity and to develop, implement, and evaluate, asappropriate, plans of action that will address thoseissues in ways that benefit the community.2,3 Our cur-rent examples demonstrate that this type of approachis labor and time intensive, requiring years beforeoutcomes are seen. However, taking the time to setdown the principals of CBPR as a foundation hasallowed us to create a sustainable community infra-structure that has supported the projects as it hasmoved through the different study phases. In short,this process has allowed us, as researchers, to gainimportant information and has allowed the commu-nity to make important social changes by empoweringits members to define their needs and how they col-lectively want to act on addressing those needs.

REFERENCES1. Bureau of the Census. 2000 United States Census. Available at

URL: http://www.census.gov [accessed September 14, 2004].

Best Practices: New York/Islam et al. 2935

2. Minkler M. Using participatory action research to buildhealthy communities. Public Health Rep. 2000;115(1–2):191–197.

3. Israel B, Schurman S, Hugentoblem MK. Conducting actionresearch: relationships between organization members andcommunities. J Appl Behav Sci. 1992;28:74 –101.

4. Centers for Disease Control and Prevention. Cigarette smok-ing among adults in United States 1997. MMWR MorbidMortal Wkly Rep. 1999;48:993–996.

5. Kuo J, Porter K. Health status of Asian Americans: UnitedStates, 1992–1994. Adv Data. 1998;7:1–16.

6. Lew R, Moskowitz JM, Wismer BA, et al. Correlates of ciga-rette smoking among Korean American adults in AlamedaCounty, California. Asian Am Pacific Islander J Health. 1991;9:49 – 60.

7. Kim K, Yu ESH, Chen EH, Kim J, Brintnall R, Vance S.Smoking behavior, knowledge, and beliefs among KoreanAmericans. Cancer Pract. 2000;8:223–230.

8. Juon H-S, Kim M, Han H, Ryu JP, Han W. Acculturation andcigarette smoking among Korean American men. YonseiMed J. 2003;44:875– 882.

9. Shinagawa S, Evaon W, Ho R. Report of the Data WorkingGroup meeting: issues for Asian American and Pacific Is-lander populations. Washington D.C.: Intercultural CancerCouncil, 1999.

10. Wildey MB, Young RL, Elder JP, et al. Cigarette point-of-saleadvertising in ethnic neighborhoods in San Diego, Califor-nia. Health Values. 1992;16:23–28.

11. U.S. Department of Health and Human Services. Tobaccouse among U.S. racial/ethnic minority groups-AfricanAmericans, American Indians and Alaska Natives, AsianAmericans and Pacific Islanders, and Hispanics: a report of

the Surgeon General. Atlanta: U.S. Department of Healthand Human Services, Centers for Disease Control and Pre-vention, National Center for Chronic Disease Preventionand Health Promotion, Office on Smoking and Health, 1998.

12. Bader K. San Francisco Billboard Survey: race, tobacco andalcohol. San Francisco: California Rural Legal Assistance,1993.

13. Centers for Disease Control and Prevention. Point of pur-chase tobacco environments and variation by store type-United States 1999. MMWR Morbid Mortal Wkly Rpt. 2002;51:184 –187.

14. Point of Purchase Advertising Institute. The Point of Pur-chase advertising industry fact book. Englewood, NJ: Pointof Purchase Advertising Institute, 1992.

15. U.S. Department of Health and Human Services, SubstanceAbuse and Mental Health Services Administration (SAM-HSA). Results from the 2002 National Survey on Drug Useand Health. Washington, DC: SAMHSA, 2002.

16. Wakefield M, Ruel E, Chaloupka F, Slater S, Kaufman N.Association of point-of-sale tobacco advertising and promo-tions with choice of usual brand among teenage smokers.J Health Commun. 2002;7:113–122.

17. California Department of Health Services. Operation Store-front. 1997. Available at URL: http://www.dhs.ca.gov/ps/cdic/ccb/tcs/html/evaluation_resources.htm [accessed September14, 2004].

18. Wakefield MA, Ruel EE, Chaloupka FJ, Slater SJ, KaufmanNJ. Association of point of purchase tobacco adverting andpromotions with choice of usual brand among teenagesmokers. ImpacTeen Research Paper Series No. 5. Chicago:University of Illinois at Chicago, 2001.

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