Display options
Cite
Boechler L, Renwick S, Alabi A, et al. Beyond the role of participant: a firsthand account of the experiences of a patient-oriented research team. Res Involv Engagem. 2021;7(1):79doi: 10.1186/s40900-021-00323-9.
Boechler, L., Renwick, S., Alabi, A., de la Torre, H., Kumar, S., Singh, H., Xavier, R., Hector, D., McTaggart, L., & Shrubsole, J. (2021). Beyond the role of participant: a firsthand account of the experiences of a patient-oriented research team. Research involvement and engagement, 7(1), 79. https://doi.org/10.1186/s40900-021-00323-9
Boechler, Lindsey, et al. "Beyond the role of participant: a firsthand account of the experiences of a patient-oriented research team." Research involvement and engagement vol. 7,1 (2021): 79. doi: https://doi.org/10.1186/s40900-021-00323-9
Boechler L, Renwick S, Alabi A, de la Torre H, Kumar S, Singh H, Xavier R, Hector D, McTaggart L, Shrubsole J. Beyond the role of participant: a firsthand account of the experiences of a patient-oriented research team. Res Involv Engagem. 2021 Nov 07;7(1):79. doi: 10.1186/s40900-021-00323-9. PMID: 34743738; PMCID: PMC8573874.
Copy Download .nbib Format: NLM
Share it on

Res Involv Engagem. 2021 Nov 07;7(1):79. doi: 10.1186/s40900-021-00323-9.

Beyond the role of participant: a firsthand account of the experiences of a patient-oriented research team.

Research involvement and engagement

Lindsey Boechler, Steven Renwick, Abdullateef Alabi, Harold de la Torre, Susheel Kumar, Harmanpreet Singh, Roshan Xavier, Dalise Hector, Lauren McTaggart, Jennifer Shrubsole

Affiliations

  1. Centre for Health Research, Improvement and Scholarship, Saskatchewan Polytechnic, Moose Jaw, Canada. [email protected].
  2. Saskatchewan Polytechnic, Moose Jaw, Canada.
  3. Patient Partner, Moose Jaw, Canada.
  4. Patient Partner, Saskatoon, Canada.
  5. Patient Partner, Regina, Canada.
  6. Prairie Skies Integration Network, Moose Jaw, Canada.
  7. Moose Jaw Multicultural Council, Moose Jaw, Canada.

PMID: 34743738 PMCID: PMC8573874 DOI: 10.1186/s40900-021-00323-9

Abstract

BACKGROUND: Immigrants often find accessing and navigating the healthcare system difficult upon arriving in Canada. Existing challenges of accessing healthcare due to differing cultural norms, language barriers, limited health literacy, and system complexity have been outlined extensively in literature; however, evidence-informed practices to mitigate these disparities have yet to be determined. Our research team took a patient-oriented research (POR) approach to learn more about the lived experiences of immigrants as they attempt to access and navigate the health system upon immigrating to Canada. POR is a method that involves patients beyond the role of participant, recognizing the lived experiences of patients as expertise and empowering patient partners to drive research priorities. This approach empowers patient partners to steer the direction of research, ensuring the study is relevant and patient priorities are addressed.

MAIN BODY: In this article, we define POR and share our team's experience of engaging in POR by providing a synopsis of team member recruitment, research priority establishment, and relationship building. We also share how joining forces with patient partners, rather than solely engaging with them as participants, benefits research endeavors and ensures patient priorities are addressed. Lastly, we present examples of how conducting POR leads to increased research capacity and personal growth for both patient partners and researchers.

CONCLUSION: Building the foundation of this study through the perspectives of patient partners has provided insight into the difficulties immigrants experience when attempting to access and navigate the health care system that can only be understood through first-hand experience. Engaging patients as active partners on research teams enhances the potential of strengthened patient engagement, increased patient commitment to treatment, and leads to improved health outcomes. Furthermore, POR provides researchers, patients, and those serving the community at hand, an opportunity to learn from one another.

© 2021. The Author(s).

Keywords: Accessible health care; Canada; Health disparities; Immigrant health; Patient-oriented research

References

  1. Syst Rev. 2018 Jul 19;7(1):101 - PubMed
  2. Health Expect. 2020 Jun;23(3):523-539 - PubMed
  3. Patient. 2021 Jul;14(4):385-387 - PubMed
  4. Pediatrics. 2019 Jun;143(6): - PubMed
  5. CMAJ. 2018 May 22;190(20):E607 - PubMed
  6. Healthc Policy. 2019 Nov;15(2):10-19 - PubMed
  7. Scand J Prim Health Care. 2017 Dec;35(4):352-359 - PubMed
  8. J Bioeth Inq. 2019 Jun;16(2):237-248 - PubMed
  9. Health Res Policy Syst. 2018 Feb 7;16(1):5 - PubMed
  10. BMJ. 2016 Sep 14;354:i3883 - PubMed
  11. Nursing. 2018 Dec;48(12):28-33 - PubMed
  12. Int J Equity Health. 2017 Jan 9;16(1):5 - PubMed

Publication Types

Grant support