Skip to main content

Advertisement

SpringerLink
Log in

Attitudes of urban American Indians and alaska natives regarding participation in research

  • Original Articles
  • Published:
Journal of General Internal Medicine Aims and scope Submit manuscript

Abstract

OBJECTIVE: To determine what factors influence participation in health research among American Indians and Alaska Natives.

METHODS: Using vignettes that described 3 types of research studies (a behavioral intervention trial, a genetic association study, and a pharmacotherapy trial), we surveyed 319 patients and 101 staff from an urban Indian health care facility to ascertain how study design, institutional sponsorship, community involvement, human subjects’ issues, and subject matter influence participation.

RESULTS: Overall response rates were 93% for patients and 75% for staff. Hypothetical participation was highest for the genetic study (patients=64%; staff=48%), followed by the behavioral intervention (patients=46%; staff=42%), and the pharmacotherapy trial (patients=32%; staff=23%). The odds of participation (odds ratio [OR]) were generally increased among patients and staff when the study was conducted by health care providers (OR=1.3 to 2.9) and addressed serious health problems (OR=1.2 to 7.2), but were decreased if the federal government led the study (OR=0.3 to 0.5), confidentiality might be broken (OR=0.1 to 0.3), and compensation was not provided (OR=0.5 to 0.7).

CONCLUSION: Close attention to study type, institutional sponsorship, community involvement, potential risks and benefits, and topic are essential to conceptualizing, designing, and implementing successful health research with American Indian and Alaska Native populations.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Brown DR, Fouad MN, Basen-Enquist K, Tortolero-Luna G. Recruitment and retention of minority women in cancer screening, prevention, and treatment trials. Ann Epidemiol. 2000;10:S13-S21.

    Article  CAS  Google Scholar 

  2. Curry L, Jackson JS. The science of including older ethnic and racial group participants in health-related research. Gerontologist. 2003;43:15–7.

    Article  Google Scholar 

  3. Daunt DJ. Ethnicity and recruitment rates in clinical research studies. Appl Nurs Res. 2003;16:189–95.

    Article  Google Scholar 

  4. Gallagher-Thompson D, Solano N, Coon D, Arean P. Recruitment and retention of Latino dementia family caregivers. Gerontologist. 2003;43:45–51.

    Article  Google Scholar 

  5. Giuliano AR, Mokau N, Hughes C, et al. Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors. Ann Epidemiol. 2000;10:22-S34.

    Article  Google Scholar 

  6. Hodge FS, Weinmann S, Roubideaux Y. Recruitment of American Indians and Alaska Natives into clinical trials. Ann Epidemiol. 2000;10:41-S8.

    Article  Google Scholar 

  7. Janson SL, Alioto ME, Boushey HA. Attrition and retention of ethnically diverse subjects in a multicenter randomized controlled research trial. Contr Clin Trials. 2001;22:236S-43S.

    Article  CAS  Google Scholar 

  8. Levkoff S, Sanchez H. Lessons learned about minority recruitment and retention from the centers on minority aging and health promotion. Gerontologist. 2003;43:18–26.

    Article  Google Scholar 

  9. Meinert JA, Blehar MC, Peindl KS, Neal-Barnett A, Wisner KL. Bridging the gap: recruitment of African-American women into mental health research studies. Acad Psychiatry. 2003;27:21–8.

    Article  Google Scholar 

  10. Moinpour CM, Atkinson JO, Thomas SM, et al. Minority recruitment in the prostate cancer prevention trial. Ann Epidemiol. 2000;10:85-S91.

    Article  Google Scholar 

  11. Olin JT, Dagerman KS, Fox LS, Bowers B, Schneider LS. Increasing ethnic minority participation in Alzheimer disease research. Alzheimer Dis Assoc Dis. 2002;16:82–5.

    Article  Google Scholar 

  12. Pinto HA, McCaskill-Stevens W, Wolfe P, Marcus AC. Physician perspectives on increasing minorities in cancer clinical trials: an eastern cooperative oncology group (ECOG) initiative. Ann Epidemiol. 2000;10:78-S84.

    Article  Google Scholar 

  13. Seto B. History of medical ethics and perspectives on disparities in minority recruitment and involvement in health research. Am J Med Sci. 2001;322:246–50.

    Article  Google Scholar 

  14. Appel LJ, Vollmer WM, Obarzanek E, et al. Recruitment and baseline characteristics of participants in the dietary approaches to stop hypertension trial. J Am Diet Assoc. 1999;99:69-S75.

    Article  CAS  Google Scholar 

  15. Arean PA, Alviderez J, Nery R, Estes C, Linkins K. Recruitment and retention of older minorities in mental health services research. Gerontologist. 2003;43:36–44.

    Article  Google Scholar 

  16. Cabral DN, Napoles-Springer AM, Miike R, et al. Population and community-based recruitment of African Americans and Latinos: the San Francisco Bay area lung cancer study. Am J Epidemiol. 2003;158:272–9.

    Article  Google Scholar 

  17. Ford ME, Havstad SL, Tilley BC. Recruiting older African American men to cancer screening trial (the AAMEN Project). Gerontologist. 2003;43:27–35.

    Article  Google Scholar 

  18. Lewis CE, George V, Fouad M, Porter V, Bowen D, Urban N. Recruitment strategies in the women’s health trial: feasibility study on minority populations. Contr Clin Trials. 1998;19:461–76.

    Article  CAS  Google Scholar 

  19. Reed PS, Foley KL, Hatch J, Mutran EJ. Recruitment of older African Americans for survey research: a process evaluation of the community and church-based strategy in the Durham elders project. Gerontologist. 2003;43:52–61.

    Article  Google Scholar 

  20. Ness RB, Nelson DB, Kumanyika SK, Grisso JA. Evaluating minority recruitment into clinical studies: how good are the data? Ann Epidemiol. 1997;7:472–8.

    Article  CAS  Google Scholar 

  21. Manson SM, Garroutte E, Goins RT, Henderson PN. Access, relevance, and control in the research process: lessons from indian country. J Aging Health. 2004;16:58s-77s.

    Article  Google Scholar 

  22. Roberson N. Clinical trial participation. Viewpoints from racial/ethnic groups. Cancer. 1994;74:2687–91.

    Article  CAS  Google Scholar 

  23. Noe TD, Manson SM, Croy CD, Mc Gough H, Henderson JA, Buchwald DS. In their own voices: American Indian decisions to participate in health research. In: Trimble JE, Fisher CB, eds. Handbook of Ethical Research with Ethnocultural Populations and Communities. Thousand Oaks, CA: Sage; 2005.

    Google Scholar 

  24. Hosmer DW, Lemeshow S. Applied Logistic Regression. New York, NY: John Wiley & Sons, Inc; 2000.

    Book  Google Scholar 

  25. Stata Statistical Software: Release 8.0 [computer program]. College Station, Tx: Stata Corporation; 2003.

  26. Manson SM. Editorial. Am Indian Alaska Native Ment Health Res. 1989;2:5–6.

    Article  Google Scholar 

  27. Arean P, Gallagher-Thompson D. Issues and recommendations for the recruitment and retention of older ethnic minority adults into clinical research. J Consult Clin Psychol. 1996;64:875–80.

    Article  CAS  Google Scholar 

  28. Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S. Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med. 1999;14:537–46.

    Article  CAS  Google Scholar 

  29. Norton IM, Manson SM. Research in American Indian and Alaska Native communities: navigating the cultural universe of values and process. J Consult Clin Psychol. 1996;64:856–60.

    Article  CAS  Google Scholar 

  30. Swanson G, Ward A. Recruiting minorities into clinical trials: toward a participant-friendly system. J Natl Cancer Inst. 1995;87:1747–59.

    Article  CAS  Google Scholar 

  31. Shavers V, Lynch C, Burmeister L. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12:248–56.

    Article  Google Scholar 

  32. Unson C, Dunbar N, Curry L. The effects of knowledge, attitudes, and significant others on decisions to enroll in a clinical trial on osteoporosis: implications for recruitment of older African-American women. J Natl Med Assoc. 2001;93:392–401.

    CAS  Google Scholar 

  33. Gorelick PB, Harris Y, Burnett B. The recruitment triangle: reasons why African Americans enroll, refuse to enroll, or voluntarily withdraw from a clinical trial. J Nat Med Assoc. 1998;90:141–5.

    CAS  Google Scholar 

  34. Groves RM, Cialdini RB, Couper MP. Understanding the decision to participate in a survey. Pub Opin Q. 1992;56:475–95.

    Article  Google Scholar 

  35. Groves RM, Presser S, Dipko S. The role of topic interest in survey participation decisions. Pub Opin Q. 2004;68:2–31.

    Article  Google Scholar 

  36. Groves RM, Singer E, Corning A. Leverage-saliency theory of survey participation. Pub Opin Q. 2000;64:299–308.

    Article  CAS  Google Scholar 

  37. Singer E, Van Hoewyk J, Neugebauer RJ. Attitudes and behavior: the impact of privacy and confidentiality concerns on participation in the 2000 Census. Pub Opin Q. 2003;67:368–84.

    Article  Google Scholar 

  38. Finch J. The vignette technique in survey research. Sociology. 1987;21:105–114.

    Article  Google Scholar 

  39. Hughes R. Considering the vignette technique and its application to a study of drug injecting and HIV risk and safer behavior. Sociol Health Illness. 1998;20:381–400.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Medicine, University of Washington, Seattle, WA, USA

    Dedra Buchwald MD

  2. School of Medicine, University of Washington, Seattle, WA, USA

    Veronica Mendoza-Jenkins BS

  3. Human Subjects Office, University of Washington, Seattle, WA, USA

    Helen McGough MA

  4. American Indian and Alaska Native Programs, University of Colorado at Denver and Health Sciences Center, downtown Denver, CO, USA

    Calvin Croy PhD, Marjorie Bezdek RN, MA & Paul Spicer PhD

Authors
  1. Dedra Buchwald MD
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Veronica Mendoza-Jenkins BS
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Calvin Croy PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Helen McGough MA
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Marjorie Bezdek RN, MA
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Paul Spicer PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Dedra Buchwald MD.

Additional information

The authors have no conflicts of interest to declare.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Buchwald, D., Mendoza-Jenkins, V., Croy, C. et al. Attitudes of urban American Indians and alaska natives regarding participation in research. J Gen Intern Med 21, 648–651 (2006). https://doi.org/10.1111/j.1525-1497.2006.00449.x

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Issue Date:

  • DOI: https://doi.org/10.1111/j.1525-1497.2006.00449.x

Key words

Search

Navigation