Analysis of the Implementation, User Perspectives, and Feedback From a Mobile Health Intervention for Individuals Living With Hypertension (DREAM-GLOBAL): Mixed Methods Study (Preprint)

Barsky, Jordan; Hunter, Rebekah; McAllister, Colin; Yeates, Karen; Campbell, Norman R.C.; Perkins, Nancy; Hua‐Stewart, Diane; Maar, Marion; Tobe, Sheldon W.

doi:10.2196/preprints.12639

Cited by 1 publication

(3 citation statements)

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“…One key contact person who has established a relationship with the community is needed to respond quickly to community staff’s questions. This person may not have all the answers but should be well connected with all members of the research team so they can get the answers in a timely fashion [38].…”

Section: Discussionmentioning

confidence: 99%

“…Over a five-year period, the research team collected interview and focus group data in all phases of the research: Data collection began with community engagement work discussions that established principles for our research [7], followed by formative research to develop the intervention [39] and a process evaluation of the RCT implementation, and finally, exit interviews at the wrap up stage of the RCT [7,38]. Formal interviews and focus groups were transcribed verbatim.…”

Section: Methodsmentioning

confidence: 99%

“…DREAM-GLOBAL demonstrated that innovations in health services delivery, mHealth technologies, and patient engagement could be successfully implemented in collaboration with Indigenous communities in Canada [38]. In an anonymous survey designed to monitor patients’ satisfaction with the intervention, 98% of the Indigenous participants (n=165/169) stated they would recommend the DREAM-GLOBAL program to a friend or relative [38]. We consider this statistic, combined with successful trial completion in all partner communities, as a preliminary indication of our culturally appropriate approach.…”

Section: Introductionmentioning

confidence: 99%

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Wise Practices for Cultural Safety in Electronic Health Research and Clinical Trials With Indigenous People: Secondary Analysis of a Randomized Clinical Trial

Maar¹,

Beaudin²,

Yeates³

et al. 2019

J Med Internet Res

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BackgroundThere is a paucity of controlled clinical trial data based on research with Indigenous peoples. A lack of data specific to Indigenous peoples means that new therapeutic methods, such as those involving electronic health (eHealth), will be extrapolated to these groups based on research with other populations. Rigorous, ethical research can be undertaken in collaboration with Indigenous communities but requires careful attention to culturally safe research practices. Literature on how to involve Indigenous peoples in the development and evaluation of eHealth or mobile health apps that responds to the needs of Indigenous patients, providers, and communities is still scarce; however, the need for community-based participatory research to develop culturally safe technologies is emerging as an essential focus in Indigenous eHealth research. To be effective, researchers must first gain an in-depth understanding of Indigenous determinants of health, including the harmful consequences of colonialism. Second, researchers need to learn how colonialism affects the research process. The challenge then for eHealth researchers is to braid Indigenous ethical values with the requirements of good research methodologies into a culturally safe research protocol.ObjectiveA recent systematic review showed that Indigenous peoples are underrepresented in randomized controlled trials (RCTs), primarily due to a lack of attention to providing space for Indigenous perspectives within the study frameworks of RCTs. Given the lack of guidelines for conducting RCTs with Indigenous communities, we conducted an analysis of our large evaluation data set collected in the Diagnosing Hypertension-Engaging Action and Management in Getting Lower Blood Pressure in Indigenous Peoples and Low- and Middle- Income Countries (DREAM-GLOBAL) trial over a period of five years. Our goal is to identify wise practices for culturally safe, collaborative eHealth and RCT research with Indigenous communities.MethodsWe thematically analyzed survey responses and qualitative interview/focus group data that we collected over five years in six culturally diverse Indigenous communities in Canada during the evaluation of the clinical trial DREAM-GLOBAL. We established themes that reflect culturally safe approaches to research and then developed wise practices for culturally safe research in pragmatic eHealth research.ResultsBased on our analysis, successful eHealth research in collaboration with Indigenous communities requires a focus on cultural safety that includes: (1) building a respectful relationship; (2) maintaining a respectful relationship; (3) good communication and support for the local team during the RCT; (4) commitment to co-designing the innovation; (5) supporting task shifting with the local team; and (6) reflecting on our mistakes and lessons learned or areas for improvement that support learning and cultural safety.ConclusionsBased on evaluation data collected in the DREAM-GLOBAL RCT, we found that there are important cultural safety considerations...

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Section: Discussionmentioning

confidence: 99%