WASHINGTON, D.C. — Every agency that serves American Indians and Alaska Natives must answer these questions in order to fuel the decision-making process: How much will it cost? How many people are served? And, by the way, who is an Indian? None of the answers are easy. The demand for federal services is growing as resources shrink. And in the health care arena the key to sustainable funding is Medicare and Medicaid (including the Children’s Health Insurance Program), where definitions are complicated by multiple factors. Consider eligibility: More than 560 tribal communities with members living on or near reservations or spread out in urban areas. Each tribe defines its membership but that data is rarely collected for use in health statistics because it's often privately held. The U.S. Census allows each individual to define his or her own status by checking a box. (Some 5 million by this count.) The Indian Health Service has another definition that adds descendants of enrolled members to the mix. And it collects data through its area offices, not states. Many IHS boundaries and reservations cross state lines, further confusing the data. Medicaid collects some American Indian Alaska Native statistics when it’s identified as a single race, excluding those who are multiracial or also consider themselves Hispanic. And, coming soon, there will be new rules from the Internal Revenue Service as part of the Patient Protection and Affordable Care Act because of the American Indian exemption from insurance mandates (as well as a new definition for urban Indians). The Office of Management and Budget has yet another definition of American Indian and Alaska Native, one that is supposed to be the federal standard. If you are still following this, on top of that grid, there are 36 states with different administrative structures (remember that Medicaid is a state-federal partnership providing medical insurance for the poor and for long-term care) each with its own process for collecting data. One result: Eleven of the 36 states collect little data about Native Americans and 7 collect none at all. As Matthew Snipp, a sociology professor at Stanford, recently said, “What a mess the data is.” But, he added, Iit’s not unique to the American Indian population, the issues arise for any group when you try to measure race.” Snipp spoke at the recent American Indian Alaska Native Data Symposium held last month at the National Museum of the American Indians. Few private health insurance plans, for example, collect the type of information that would be useful in this framework. Of course data isn’t what’s really important here, instead it’s how those numbers drive policy and funding and that’s where Medicaid and Medicare are the biggest players in that game. Edward Fox, Squaxin Island Tribe, a consultant with Kauffman and Associates and author of the paper, "Medicaid and Indian Health Programs," said, "Medicaid expenditures exceed Indian Health Service expenditures in some areas." He said in the Tucson Area office Medicaid is 156 percent of the IHS total; at Navajo, it’s 137 percent, Phoenix 94 percent and Alaska 91 percent. Health care reform should boost financial support across the Indian health system because of the expansion of eligibility to include those to 133 percent of the federal poverty level and, for the first time, covering single adults. The data has another purpose: To help understand — and to correct — the health disparity between American Indian and Alaska Native populations. What strategies, backed up by the data, work best to reduce diabetes? Or better are there clues to how to prevent the disease in the first place? And what do you compare those numbers against as a metric for success? But it's also why the data matters. It's why the country and the American Indian Alaska Native community have to get this right. And, by the way, who is an Indian? That question soon takes on criminal proportions when the IRS judges the Native American exemption to the health insurance mandate. But unlike the Census form, there will likely be a penalty for claiming a tribal affiliation when one doesn’t exist.