Participatory Design and Research: Pathways to Healthy Communities and Racial Equity
Our vision is a nation where Americans embrace our common humanity, and children of every race and ethnicity have equal opportunities to thrive. While the U.S. Census shows the populations of Asian Americans, Native Hawaiians and Pacific Islanders (AA and NHPI) are growing significantly, the opportunities of these Americans in education, wellness and economic stability are still negatively impacted by the lasting effects of structural racism.
In the area of health, wellness and health care in particular, AAs and NHPIs disproportionately feel the pain of our nation’s health care system. These communities have a unique history of structural racism that adversely impacts the health and social dynamics of children and families. For example, Kekoa, a 16-year old obese Native Hawaiian male with type 2 diabetes, became depressed. He took up smoking and drinking on a daily basis because he did not feel valued as a Native Hawaiian and believes society did not have much to offer him. Much of Kekoa’s beliefs stems from the second-class status that Native Hawaiians still experience today—decades after colonialism. Present-day colonialism continues to structure power, resources and money largely along racial and ethnic lines. 1
Like other communities of color in the US, AA and NHPI communities have higher rates of certain preventable diseases, such as Hepatitis B, tuberculosis, and certain cancers.2,3,4,5 Nearly one in five is uninsured.6 In large part, these problems result from poverty, cultural barriers, and language problems that prevent AAs and NHPIs from obtaining health insurance and high-quality health care.7
The statistics are startling. Many AAs and NHPIs (12 percent) are poor, and some ethnic groups are more likely to lack insurance. One in three Korean Americans and one in four Native Hawaiians and Pacific Islanders are uninsured.6 Asian Americans have the lowest cervical cancer screening.8 Thirty six percent of Asian Americans age 50 or older did not comply with colorectal cancer screening recommendations.9 Liver cancer rate among Vietnamese American men is more than 11 times that of white men.5
Given all this, AA and NHPI populations and their health and health care issues can no longer be ignored.10,11 Over the past three decades, AA and NHPI populations have seen tremendous growth in comparison to other racial groups. From 1980 to 2010, AAs and NHPIs increased dramatically from 1.5% (3.5 million) and 0.1% (260,000) to 5.6% (17.3 million) and 0.4% (1.2 million) of the total U.S. population respectively and are projected to reach 9.2% (40.6 million) and 0.6% (2.6 million) of the total U.S. population by 2050. 12,13, 14 However, despite the tremendous growth, there is a lag in funding and support for programs serving AAs and NHPIs and very little data and research to understand AA and NHPI health. 15,16
National initiatives to understand and uproot health and health care inequities and strengthen community capacity among AAs and NHPIs have been limited. The continuing lack of awareness or recognition of the lived experiences and history of institutional racism on AAs and NHPIs and their critical impact on the health, well-being, and racial healing has been a particularly disturbing issue.7,12,17, 18 This neglected American history of structural racism has facilitated a lack of trust of government and public health institutions by AA and NHPI communities over generations. In particular, there has been a lack of trust by many AAs and NHPIs to engage and participate in data collection and research. [End Page 1]
The W.K. Kellogg Foundation took major steps to close these gaps and funded the largest ever national investment on AA and NHPI health through the $16.5 million, five-year Health Through Action (HTA) program. HTA has been a partnership between W. K. Kellogg Foundation and the Asian & Pacific Islander American Health Forum (APIAHF). The goals of HTA include strengthening community capacity, advocating for increased data collection and research, training and supporting HTA grantees in their advocacy efforts, developing an NHPI health agenda, and building a national network to organize and advocate for AA and NHPI health and health care equity.
One key component of HTA has been the Health Brain Trust (HBT). The HBT conducted five national convenings of government, community, and research stakeholders to develop a national health agenda on AA and NHPI data and research. Key challenges identified include the lack of data and research about AA and NHPI health, and trust of researchers and their traditional parachute-in and parachute-out research process among AA and NHPI communities. A key recommendation is to advance community-based participatory research (CBPR) in AA and NHPI communities to cultivate trust, build relations, and foster partnerships between research institutions and community residents and organizations, as well as to engage and support community initiatives that are directly relevant and meaningful to AA and NHPI communities.
Another key recommendation is to support and disseminate community initiatives for building the evidence-base for AA and NHPI health inequities and associated community-based strategies. The efforts to implement these recommendations led to this strategic partnership by APIAHF and the Progress in Community Health Partnerships (PCHP) journal resulting in this special issue on AA and NHPI health.
In this special issue of PCHP, Cook and colleagues highlight the efforts of APIAHF and the Association of Asian Pacific Community Health Organizations (AAPCHO) to promote and legitimize data and research initiated by national organizations representing AA and NHPI communities.19 Their successes demonstrate the value of national advocacy organizations to bridge traditional community-research barriers, advance evidence-based research, and inform health policy.
The articles by Chin and Abesamis-Mendoza, Hirano, and Quach and colleagues, demonstrate the value of participatory research that is local community initiated and their substantive influence and impact in shaping healthy communities.20,21,22 These leading local community initiatives together are building the evidence-base for AA and NHPI health, highlighting frontline community data and research documenting AA and NHPI health inequities and assets across our nation.
Trinh-Shevrin and colleagues showcase the importance of government, community, and research partnerships through Research Centers such as the New York University Center for the Study of Asian American Health as leading CBPR models for advancing meaningful community strategies to improve AA and NHPI health and health care.23
The articles by Boyd and colleagues, Look and colleagues, and Panapasa and colleagues showcase the innovations and unique aspects of leading NHPI community health initiatives on data and research in Hawaii and the mainland United States. 24,25,26 Advancing NHPI data and research on the frontlines documents racism and health, as well as highlights solutions which ensure a deep respect for traditional healing practices, collaborations with community-based organizations and elders, and education and training for NHPI youth.
The dramatic changes to the national population landscape requires new understanding and recognition of health and health care inequities and their root causes, particularly among underserved or underrepresented populations. Participatory design and research offers the potential and promise to cultivate racial healing and health equity across diverse populations. The AA and NHPI children and families are growing at a phenomenal rate across the United States, and so must our commitment to ensure equitable opportunities for all. [End Page 2]
1. Mayeno L, Kaholokula, JK, Liu, DMKI, Asato L, Tseng W. Health Equity for Asian American, Native Hawaiian, and Pacific Islander Children and Youth: What’s Racism Got to Do With It? Poverty & Race. 2011; 20: 7–12.
2. Lee H, Baik S. Health disparities or data disparities: sampling issues in hepatitis B Virus infection among Asian American Pacific Islander studies. Applied Nursing Research. 2004; 24: e9–e15.
3. Chang ET, So SKS. Chronic Hepatitis B and Liver Cancer: The Greatest Health Disparity between Asian and Non-Asian Americans. In: Asian American Health: Taking Notice and Taking Action Bateman W, Abesamis-Mendoza N, Ho-Asjoe H. eds. Santa Barbara: Praeger; 2009, pp. 177–199.
4. Ho C. Tuberculosis: New Strategies for Battling an Ancient Killer. In Asian American Health: Taking Notice and Taking Action. Bateman W, Abesamis-Mendoza N, Ho-Asjoe H, eds. Santa Barbara: Praeger; 1993, pp. 201–238
5. Miller BA, Chu KC, Hankey BF, Ries LA. Cancer incidence and mortality patterns among specific Asian and Pacific Islander populations in the U.S. Cancer Causes Control. 2008; 19: 227–56.
6. U.S. Census Bureau. 2009 American Community Survey One-Year Estimates. Washington (DC): U.S. Census Bureau Population Division; 2009.
7. Tseng W. Social, Cultural, and Demographic Characteristics of Asian Americans. In Asian American Communities and Health Trinh-Shevrin C, Islam NS, Rey MJ. eds, San Francisco: Jossey-Bass; 2009, pp. 23–49.
8. Chen MS. Cancer health disparities among Asian Americans. Cancer. 2009; 104: 2895–2902.
9. California Health Interview Survey. California Health Interview Survey. Los Angeles, CA: UCLA Center for Health Policy Research; 2009.
10. Zane NWS, Takeuchi DT, Young KNJ. Overview of Asian and Pacific Islander Americans. In Confronting Critical Health Issues of Asian and Pacific Islander Americans Zane, NWS, Takeuchi DT, Young KNJ, eds, Thousand Oaks: Sage Publications; 1994; pp. 3–21.
11. Trinh-Shevrin C, Islam NS, Rey MJ. Toward a Contextual Understanding of Asian American Health. In Asian American Communities and Health Trinh-Shevrin C, Islam NS, Rey MJ. eds, San Francisco: Jossey-Bass; 2009, pp. 3–22.
12. Barringer H, Gardner RW, Levin MJ. Asians and Pacific Islanders in the United States. New York: Russell Sage Foundation; 1993.
13. U.S. Census Bureau. DP-2. Profile of Selected Social Characteristics: 2010. Washington (DC): U.S. Census Bureau Population Division; 2010.
14. U.S. Census Bureau. 2008 National Population Projections. Washington (DC): U.S. Census Bureau Population Division, 2008.
15. Ghosh C. Healthy People 2010 and Asian Americans/Pacific Islanders: defining a baseline of information. American Journal of Public Health. 2003; 93: 2093–2098.
16. Ghosh, C. (2009). Asian American Health Research: Baseline Data and Funding. In Asian American Communities and Health Trinh-Shevrin, C, Islam NS, Rey MJ. eds. San Francisco: Jossey-Bass; 2009; pp. 73–103.
17. Hing BO. Making and Remaking Asian America Through Immigration Policy, 1850–1990. Stanford: Stanford University Press; 1993.
18. Panapasa S. Social, Demographic, and Cultural Characteristics of U.S. Pacific Islanders. In Asian American Communities and Health Trinh-Shevrin C, Islam NS, Rey MJ. eds, San Francisco: Jossey-Bass, 2009, pp. 50–72.
19. Cook WK, Weir RC, Ko KL, Ro M, Panapasa S, Trinh-Shevrin et al. Improving Asian American, Native Hawaiian, and Pacific Islander Health: National Organizations Leading Community Research Initiatives. Prog Community Health Partnersh, 2012; 6: 33–42.
20. Chin J, Abesamis-Mendoza, N. Project CHARGE: Building an Urban Health Policy Advocacy Community. Prog Community Health Partnersh, 2012; 6: 17–24.
21. Hirano D. Asian American Health Research: What Community Agencies on the Front Line Need to Know. Prog Community Health Partnersh, 2012; 6: 59–64.
22. Quach T, Liou, J, Fu, L, Mendiratt A, Tong M, Reynolds P. Developing a Proactive Research Agenda to Advance Nail Salon Worker Health, Safety and Rights. Prog Community Health Partnersh, 2012; 6: 75–82.
23. Trinh-Shevrin C, Ro, M, Tseng W, Islam N, Rey MJ, Kwon SC. Role of Federal Policy in Building Research Infrastructure Among Emerging Minorities: The Asian American Experience. Prog Community Health Partnersh, 2012; 6: 83–94.
24. Boyd JK, Kuuleialoha SAK, Braun KL. Pathway out of Poverty: A Values-Based College-Community Partnership to Improve Long-Term Outcomes of Underrepresented Students. Prog Community Health Partnersh, 2012; 6: 25–32.
25. Look M, Keawe’aimoku Kaholokula J, Carvhalo A, Seto T, Mapuana de Silva M. Developing a Culturally Based Cardiac Rehabilitation Program: The HELA Study. Prog Community Health Partnersh, 2012; 6: 103–110.
26. Panapasa S, Jackson J, Caldwell C, Heeringa S, McNally J, Williams D, et al. Community-Based Participatory Research Approach to Evidence-Based Research: Lessons From the Pacific Islander American Health Study. Prog Community Health Partnersh, 2012; 6: 53–58. [End Page 3]