Access, relevance, and control in the research process: lessons from Indian country

J Aging Health. 2004 Nov;16(5 Suppl):58S-77S. doi: 10.1177/0898264304268149.

Abstract

Objective: To illustrate successful strategies in working with American Indian (AI) and Alaska Native (AN) communities in aging and health research by emphasizing access, local relevance, and decision-making processes.

Methods: Case examples of health studies involving older AIs (greater than or equal to 50 years) among Eastern Band Cherokee Indians, a federally recognized reservation; the Cherokee Nation, a rural, nonreservation, tribal jurisdictional service area; and Lakota tribal members living in Rapid City, South Dakota.

Results: Local review and decision making reflect the unique legal and historical factors underpinning AI sovereignty. Although specific approval procedures vary, there are common expectations across these communities that can be anticipated in conceptualizing, designing, and implementing health research among native elders.

Conclusions: Most investigators are unprepared to address the demands of health research in AI communities. Community-based participatory research in this setting conflicts with investigators' desire for academic freedom and scientific independence. Successful collaboration promises to enhance research efficiencies and move findings more quickly to clinical practice.

Publication types

  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Aged
  • Communication*
  • Culture*
  • Ethics, Research
  • Humans
  • Indians, North American*
  • Long-Term Care / statistics & numerical data
  • Physician-Patient Relations
  • Research Design*
  • Smoking
  • United States