Heidi K. Tom

Asian & Pacific Islander American Health Forum, Inc.

I am very honored to be included to provide testimony this morning. My name is Heidi Tom and I am a Project Coordinator at the Asian & Pacific Islander American Health Forum. As a national advocacy organization dedicated to the improved health status of the Asian and Pacific Islander American communities, the Health Forum assures that the health and welfare needs of our communities are addressed through policy analysis, research, information dissemination and community capacity building activities. It is with an emphasis on ethnic specific data that the Health Forum is able to advocate for an accurate representation of the health needs of the distinct Asian and Pacific Islander communities. In addition, through community sensitive research that better informs health policy makers and providers, the Health Forum is able to contribute to the shaping of public health policies and programs. With this in mind, I share some thoughts with you this morning.

As heavy data users since the inception of our organization and again, as advocates for Asian and Pacific Islander health, we recognize the importance for good data and health care delivery systems as fundamental components to the adoption of data standards. Data issues related to privacy and informed consent surface and exist which affect not only data collection and reporting, but also data utilization and effectiveness for the provision of health care services. Today I will focus on three fundamental data issues as they relate to the Asian & Pacific Islander communities, their inclusion in data systems, and their ability to access appropriate health care services. These three issues are: culturally and linguistically sensitive approaches, community perspective, and diversity in ethnic representation.

I. Culturally and Linguistically Sensitive Approaches

The goal of obtaining health information from patients and providing health care services to the API communities, should not compromise nor ignore variations in language, ethnic specific perceptions, socioeconomic status, etc. Patients, no matter their backgrounds, should be treated with sensitivity. For example, sensitivity means that sincere efforts will be made to provide an interpreter for the limited English speaking patients; this will enhance their ability to give informed consent and accurate diagnostic information, which will then lead to better and more appropriate health care access and delivery.

Part of incorporating sensitivity into the health care delivery system is the serious consideration of people's belief systems and how those may affect a patient's ability to truly give his/her informed consent and accurate information. Cultural beliefs and concepts of health care and medicine heavily impact people's perception of and reception to receiving health care. Based on a community profile series that was conducted by the Cross-Cultural Health Care Program at the Pacific Medical Center in Seattle, Washington, I offer the following examples:

• Same-sex health care providers and interpreters were generally preferred and interpreters should be made available to the patients and their families.
• "South Asians* perceive the health care provider as the authority. They feel their role is passive, respectful and obedient in the provider's presence.... The patient or family will seldom ask questions because it might seem rude...."
• "Western health care is confusing and overwhelming for many Cambodians. Language and cultural barriers, crowded waiting areas, multiple interviews, mysterious procedures and the somewhat abrupt behavior of health personnel all make obtaining health care an unpleasant experience."
• "Many Cambodians believe blood draws are very painful and will make them weaker because blood is not replaced. X-rays are thought to destroy red blood cells and lower life expectancy."

Patients are people -- very real people with very real beliefs, fears, needs and feelings. Thus culturally and linguistically sensitive approaches become very important to good data and health care delivery systems. A provider who displays a genuine and sincere concern for the participants' health and well-being versus treating the patient as merely a "subject", will help build a trusting relationship that the patient will appreciate and thus be more willing to disclose information. Creating a comfortable setting -- not only physically but also psychologically and socially -- with language appropriate interpreters, forms and written materials, will help keep intact a patient's self esteem and sense of security that will facilitate a better informed consent decision, data collection process and health care delivery system.

Knowing that there are numerous cultural beliefs and languages, it is unrealistic to expect that the providers be expert sociologists or linguists for each ethnic population. However, cultural and linguistic considerations for the communities served would greatly enhance the health care access and utilization, and thus improve and assure integrity in the data systems. Such systems could be assisted by local community based agencies and clinics for cultural and linguistic considerations.

This leads to the second issue: Community Perspective.

II. Community Perspective

By "Community Perspective", I mean that one needs to think of the health, including the mental health, of the community. In other words, the community cannot just be the subject of one's data, but the community needs to be a partner in the data collection and health care delivery system methodology.

A Community Perspective for data collection can be accomplished through establishing true partnerships with community based workers and/or organizations who are working IN the community, FOR the community, and WITH the community. Through partnership, the survey instruments can be developed that are more appropriate for the communities surveyed. Community based individuals and organizations are well respected and trusted by their clients and constituents. They are able to provide the cultural sensitivity and linguistic needs of the community. And it is through such individuals and organizations that community members seek medical, mental, social, financial and educational support. Through establishing a partnership with these individuals and entities, data collection efforts and health care delivery systems can be enhanced, better utilized, and more effective.

In addition, continuing a Community Perspective for data analyses and reporting becomes imperative for the utilization and effectiveness of the data collected and health service system. For instance, the value added from having a community perspective in the analyses of the data would demonstrate more comprehensively the community's health status. Thus, health services could be targeted more appropriately for the community, in particular those traditionally underserved.

Which leads to the third issue: Diversity in Ethnic Representation

III. Diversity in Ethnic Representation

The traditionally underserved populations tend to have the least amount of data describing their populations. Such populations also tend to be under- and un-insured.

To mask the health conditions and health coverage status of the API populations under "Other" during the collection and reporting of the study findings, would be irresponsible and a misrepresentation of this diverse populace. In addition, reporting data on the Asian and Pacific Islander communities as an aggregated community ignores the diversity and often bipolar conditions of the Asian and Pacific Islander communities. The health status and access issues that the Chinese or Korean American populations face are very different from that of the Vietnamese, the Hmong, the Filipino, the Samoan, and all combinations in-between. When ascertaining the health status, health needs and health coverage status of a specific ethnic group, and how that group compares to others, the data have minimal utilization and value when aggregated. Therefore, collection data systems need to be ethnic specific, as often there are cultural aspects and beliefs that directly impact a specific ethnic population's health, as previously illustrated.

Furthermore, the rich diversities ethnically of the API community need to be considered in the collection, analysis and reporting of the data, which, again, will then contribute to the enhanced and increased utilization and effectiveness of the data and the health care delivery systems.

In conclusion, good data collection and health care delivery systems include the integration of culturally and linguistically sensitive approaches, community perspective, and diversity in ethnic representation. Ignoring these issues would compromise the data issues related to privacy and the informed consent process, and the credibility of the health care institutions would be suspect at the least.

Incorporating these issues would demonstrate the providers' and/or health care institutions' commitment to maximizing health care service utilization amongst various communities across the U.S., and increase data and health care system utilization and effectiveness. Furthermore, and finally, integrating these issues will ensure a good methodology for providing health services to Asian and Pacific Islander communities and other communities with distinct cultural, linguistic, community, and diverse needs.

Thank you!