Northwest Portland Area Indian Health Board: Indian Leadership for Indian Health

Data/Statistics

The Importance of Data in Developing a Tobacco Program

Data is the primary means by which we discover the nature of the problem that needs to be addressed. Without data, we might FEEL that our community is abusing tobacco and that this is resulting in disease, but we have no reliable, objective way to justify our feelings and persuade others to help us make a change. Data is the necessary tool that will provide justification for our tobacco programs and help to gather support from the community.

How Data is used

For Assessment

Data is necessary in planning the content of prevention programs. For example, you might be trying to decide between targeting men or women in your program. Data on which gender has a higher smoking prevalence will help you target the most affected population. Data can also tell you what goal areas to focus on (ex: cessation or secondhand smoke?)

For Evaluation

Evaluation is a key component to any program. If you spend time and money to implement an activity, everyone involved will want to know- did it work? Did anything change? Did things change the way you intended? What can you do better? In order to accurately answer these questions, you must gather data before, after, and during the program.

For Advocacy and Education

Data will help you get attention for your programs. People will be more interested in supporting and helping when you have accurate information to justify the need for your activities. If you are writing a grant or educating community leaders, you will need to present data on the current situation in your community.
Where Data is Found

Primary Data

Primary Data is data collected directly from the community you are working with. Examples include conducting your own survey interviews, questionnaires, measurements, or direct observations. Primary data comes straight from the source (i.e. your tribal community). Gathering primary data is a good way to raise community awareness and involvement, while also gathering information.

Secondary Data

Secondary Data is data collected by other groups or organizations, but made available to the general public. National statistics, data gathered from RPMS, and previous surveys are all examples of secondary data. Before going to the work of collecting your own data, it is very important to review what is already available, and see if it will suit your needs.
National and State Statistics

National Statistics

National statistics on tobacco use can be found through a number of organizations, many of which are available on the Internet. Following are a few good web sites:

  • www.cancer.org - American Cancer Society- (prevalence and incidence rates for various cancers)
  • www.oas.samhsa.org - U.S. Department of Health and Human Services
  • www.who.int/research/en/ - World Health Organization
  • www.lungusa.org - American Lung Association
  • www.cdc.gov/tobacco/ - Center for Disease Control

Behavioral Risk Surveillance System (BRFSS, “Bur-Fuss")

This is an ongoing telephone survey of U.S. adults with phones. The survey collects information about tobacco use and other health indicators. The same survey was done in 7 northwest tribes in 2001, using face-to-face interviews rather than phone interviews. This information is tribal specific and the surveys were designed to be culturally sensitive. Data from this study is available at the Northwest Portland Area Indian Health Board.BRFSS

The American Indian Adult Tobacco Survey

Who?

The Western Tobacco Prevention Project (WTPP), the Center for Disease Control (CDC), and 11 tribal communities throughout the US.

What?

The American Indian Adult Tobacco Survey (AI ATS) is a questionnaire of people’s knowledge, attitudes, and behaviors regarding tobacco use. The original Adult Tobacco Survey (ATS) was implemented in individual states using telephone interviews. The Center for Disease Control has worked in collaboration with the seven tobacco Tribal Support Centers (TSC) to develop a comprehensive, culturally appropriate survey instrument to assess American Indian/Alaska Native tobacco use. Extensive cognitive interviews and focus group testing has been done on the survey instrument in American Indian/Alaska Native communities throughout the nation.

When?

The development of a culturally appropriate survey tool began in 2002. Project completion is anticipated for fall of 2005.

Why?

While we have some national, regional, and state-level tobacco related data broken down by age, gender, and urban or rural populations, factors affecting tobacco use within tribal communities is still largely unknown. National studies show American Indians/Alaska Natives as having the highest tobacco use rate of all ethnic groups. There is a need for a better understanding of the social, cultural, economic, and environmental factors that make tribal communities and American Indian tobacco prevalence rates differ drastically from national rates. These factors have not been comprehensively evaluated in American Indian communities, and may be critical in developing effective, culturally appropriate prevention and cessation programs for tribal communities.

Where?

The AI ATS is currently being implemented in 11 tribal communities throughout the US. Upon project completion, we are hopeful that the survey instrument will be available for use in other northwest tribal communities.

Northwest Tribes call for Greater Recognition of Data Ownership

In July 2005, members of the Northwest Portland Area Indian Health Board (NPAIHB) unanimously passed a joint resolution calling for greater “Tribal Ownership of Health-Related Data.” The Resolution serves as a formal statement to researchers and funding agencies, calling for unequivocal tribal ownership of the data collected.
For decades, Tribes have been the subject of medical and anthropological research, with few benefits returning back to the tribe as a result of their participation. In doing so, researchers have failed to recognize tribal sovereignty and their right to self-determination.

Both in the Northwest and in other regions of Indian Country, concerns about tribal “ownership” have arisen upon discovery of unethical research practices. The most recent notable example involved the Havasupai Tribe, which filed a lawsuit against Arizona State University in 2004 after learning that nearly 400 blood samples were used by the University to study schizophrenia, migration, and inbreeding without the consent of the Tribe. Tribal members originally provided the samples to support diabetes testing and research, and were not told that a their genetic information would be used for alternate purposes.

The “Tribal Ownership” Resolution passed by the NPAIHB was designed to pre pre-empt such occurrences in the Northwest, and to help safeguard Tribal interests from unauthorized scientific research.

To view a PDF version of this document click on the following link: Resolution.pdf