Skip to main content

Community-Based Participatory Research and Respondent-Driven Sampling: A Statistician’s, Community Partner’s and Students’ Perspectives on a Successful Partnership

  • Chapter
  • First Online:
Applied Data Science

Part of the book series: Studies in Big Data ((SBD,volume 125))

  • 288 Accesses

Abstract

Community-based participatory research fully integrates statistical scientists into the research team, creating dynamic research relationships where both researchers and community partners are educated. Graduate students are also provided opportunities to collaborate with diverse stakeholders and develop skills in knowledge translation. A community-based framework is optimal for studying hard-to-reach populations since community ownership of study processes and results ensures research questions better reflect the community’s priorities and needs. Respondent-driven sampling has become increasingly popular as a survey and analysis technique within community-based participatory research due to its ability to recruit hard-to-reach populations more effectively and with less bias than traditional sampling techniques. This chapter focuses on the experiences of the authors within community-based research partnerships which incorporate respondent-driven sampling. Several areas of reflection and suggestions for successful community-based research partnerships for statistical scientists and trainees are highlighted through their stories.

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

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 149.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 199.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Avery, L., Nooshin, R., McKnight, C., Firestone, M., Smylie, J., Rotondi, M.: Unweighted regression models perform better than weighted regression techniques for respondent-driven sampling data: results from a simulation study. BMC Med. Res. Methodol. 19(1), 202 (2019). https://doi.org/10.1186/s12874-019-0842-5

    Article  Google Scholar 

  2. Bartlett, D.J., McCoy, S.W., Chiarello, L.A., Avery, L., Galuppi, B.: A collaborative approach to decision making through developmental monitoring to provide individualized services for children with cerebral palsy. Phys. Ther. 98(10), 865–875 (2018). https://doi.org/10.1093/PTJ/PZY081

    Article  Google Scholar 

  3. Committee on Professional Ethics of the American Statistical Association.: Ethical guidelines for statistical practice (2018). https://www.amstat.org/asa/files/pdfs/EthicalGuidelines.pdf

  4. Coughlin, S., Smith, S., Fernandez, M.: Overview of community-based participatory research. In: Handbook of Community-Based Participatory Research. Oxford University Press (2017). https://doi.org/10.1093/acprof:oso/9780190652234.001.0001/acprof-9780190652234-chapter-1

  5. Fayed, N., Avery, L., Davis, A.M., Streiner, D.L., Ferro, M., Rosenbaum, P., Cunningham, C., Lach, L., Boyle, M., Ronen, G.M.: Parent proxy discrepancy groups of quality of life in childhood epilepsy. Value in Health 22(7), 822–828 (2019). https://doi.org/10.1016/j.jval.2019.01.019

    Article  Google Scholar 

  6. Fellows, I.E.: Respondent-driven sampling and the homophily configuration graph. Stat. Med. 38(1), 131–150 (2019). https://doi.org/10.1002/sim.7973

    Article  MathSciNet  Google Scholar 

  7. Firestone, M., Maddox, R., O’Brien, K., Xavier, C., Wolfe, S., Smylie, J.: Our Health Counts—Project Overview & Methods. Well Living House (2018). http://www.welllivinghouse.com/wp-content/uploads/2019/10/Project-Overview-Methods-OHC-Toronto.pdf

  8. Gile, K.J., Handcock, M.S.: Respondent-driven sampling: an assessment of current methodology. Sociol. Methodol. 40(1), 285–327 (2012). https://doi.org/10.1111/j.1467-9531.2010.01223.x

    Article  Google Scholar 

  9. Gile, K.J.: Improved inference for respondent-driven sampling with application to HIV prevalence estimation. J. Am. Stat. Assoc. 106(493), 135–146 (2011). https://www.jstor.org/stable/41415539

  10. Heckathorn, D.D.: Respondent-driven sampling: a new approach to the study of hidden populations. Soc. Probl. 44(2), 174–199 (1997). https://doi.org/10.2307/3096941

    Article  Google Scholar 

  11. Heckathorn, D.D.: Respondent-driven sampling II: deriving valid population estimates from chain-referral samples of hidden populations. Soc. Probl. 59(1), 11–34 (2002). https://doi.org/10.1525/sp.2002.49.1.11

    Article  Google Scholar 

  12. Hunt, N., Stillwell, G., Taylor, C., Griffiths, P.: Evaluation of a brief intervention to prevent initiation into injecting. Drugs: Educ. Prev. Policy 5(2), 185–194 (1998). https://doi.org/10.3109/09687639809006684

  13. Hyett, S., Gabel, C., Marjerrison, S., Schwartz, L.: Deficit-based Indigenous Hhealth research and the stereotyping of Indigenous peoples. Can. J. Bioeth. Revue Canadienne de Bioéthique 2(2), 102–109 (2019). https://doi.org/10.7202/1065690ar

    Article  Google Scholar 

  14. Johnston, L.G., Hakim, A.J., Dittrich, S., Burnett, J., Kim, E., White, R.G.: A systematic review of published respondent-driven sampling surveys collecting behavioral biologic data. AIDS Behav. 20(8), 1754–1776 (2016). https://doi.org/10.1007/s10461-016-1346-5

    Article  Google Scholar 

  15. Jubinville, D.: Resources to support Indigenous reproductive health and justice in Toronto: a respondent-driven sampling study. Master’s thesis, Simon Fraser University, Simon Fraser University: Summit—Institutional Repository (2018)

    Google Scholar 

  16. Khobzi, N., Flicker, S.: Lessons learned from undertaking community-based participatory research dissertations: the trials and triumphs of two junior health scholars. Prog. Commun. Health Partnersh. Res. Educ. Action 4(4), 347–356 (2010). https://doi.org/10.1353/cpr.2010.0019. PMID: 21169713

    Article  Google Scholar 

  17. McConkey, S.: The Indigenous determinants of health as predictors for diabetes and unmet health needs among urban Indigenous people: a respondent-driven sampling study in Toronto, Ontario. Master’s thesis, The University of Western Ontario. Western Graduate & Postdoctoral Studies: Electronic Thesis and Dissertation Repository (2018)

    Google Scholar 

  18. Reading, C.: Structural determinants of Aboriginal peoples’ health. In: Greenwood, M., de Leeuw, S., Lindsay, N., Reading, C. (eds.) Determinants of Indigenous peoples’ health in Canada, pp. 3–15. Canadian Scholars’ Press (2015)

    Google Scholar 

  19. Rotondi, M.A., O’Campo, P., O’Brien, K., Firestone, M., Wolfe, S.H., Bourgeois, C., Smylie, J.K.: Our Health Counts Toronto: using respondent-driven sampling to unmask census undercounts of an urban Indigenous population in Toronto. Can. BMJ Open 7, e018936 (2017). https://doi.org/10.1136/bmjopen-2017-018936

    Article  Google Scholar 

  20. Royal Statistical Society & Institute and Faculty of Actuaries.: A guide for ethical data science (2019). https://www.actuaries.org.uk/system/files/field/document/An%20Ethical%20Charter%20for%20Date%20Science%20WEB%20FINAL.PDF

  21. Salganik, M.J., Heckathorn, D.D.: Sampling and estimation in hidden populations using respondent-driven sampling. Sociol. Methodol. 34(1), 193–240 (2004). https://doi.org/10.1111/j.0081-1750.2004.00152.x

    Article  Google Scholar 

  22. Smylie, J., Firestone, M., Cochran, L., Prince, C., Maracle, S., Morley, M., Mayo, S., Spiller, T., McPherson, B.: Our Health Counts: Urban Aboriginal health database research project—community report. Well Living House (2011). http://www.ourhealthcounts.ca/images/PDF/OHC-Report-Hamilton-ON.pdf

  23. Statistical Society of Canada.: Code of ethical statistical practice (2004). https://ssc.ca/sites/default/files/data/Members/public/Accreditation/ethics_e.pdf

  24. Strike, C., Rotondi, M., Kolla, G., Roy, É., Rotondi, N., Rudzinski, K., Balian, R., Guimond, T., Penn, R., Silver, R., Millson, M., Sirois, K., Altenberg, J., Hunt, N.: Interrupting the social processes linked with initiation of injection drug use: Results from a pilot study. Drug Alcohol Depend 137, 48–54 (2014). https://doi.org/10.1016/j.drugalcdep.2014.01.004

    Article  Google Scholar 

  25. Tennant, P.W.G., Murray, E.J., Arnold, K.F., Berrie, L., Fox, M.P., Gadd, S.C., Harrison, W.J., Keeble, C., Ranker, L.R., Textor, J., Tomova, G.D., Gilthorpe, M.S., Ellison, G.T.H.: Use of directed acyclic graphs (DAGs) to identify confounders in applied health research: review and recommendations. Int. J. Epidemiol 50(2), 620–632 (2021). https://doi.org/10.1093/ije/dyaa213

  26. Tremblay, M.C., Martin, D.H., McComber, A.M., McGregor, A., Macaulay, A.: Understanding community-based participatory research through a social movement framework: a case study of the Kahnawake Schools Diabetes Prevention Project. BMC Public Health 18(1), 487 (2018). https://doi.org/10.1186/s12889-018-5412-y

    Article  Google Scholar 

  27. Walter, M., Andersen, C.: Indigenous Statistics: A Quantitative Research Methodology. Left Coast Press (2013)

    Google Scholar 

  28. Wong, O.: Identification of risk and protective factors: A study of major depressive disorder among Indigenous adults in Toronto. Master’s thesis, York University. YorkSpace—Institutional Repository: Electronic Theses and Dissertations (2019)

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to M. A. Rotondi .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Rotondi, M.A. et al. (2023). Community-Based Participatory Research and Respondent-Driven Sampling: A Statistician’s, Community Partner’s and Students’ Perspectives on a Successful Partnership. In: Woolford, D.G., Kotsopoulos, D., Samuels, B. (eds) Applied Data Science. Studies in Big Data, vol 125. Springer, Cham. https://doi.org/10.1007/978-3-031-29937-7_5

Download citation

Publish with us

Policies and ethics