Reducing Health Research Information Inequities: A Strengths-Based Design Approach with Alaska Native and American Indian Communities

Abstract

American Indian and Alaska Native (ANAI) people have experienced a history of unethical and exploitative health research practices, such as being exposed to procedures without informed consent and having research results disseminated without community input or approval. Oversights like these increase the need for transparency, community representation, and accountability in research at all stages from project conceptualization to results dissemination. Moreover, ANAI have been under-represented in large national health research initiatives—such as NIH’s All of Us research program—and have only recently started being consulted in meaningful ways about how best to implement health research or disseminate actionable findings relevant to local community context. For many researchers, the primary method of disseminating research results is to submit manuscripts to peer-reviewed journals or conference presentations, which essentially limits their audience to academic scholars. Limiting dialogue between community stakeholders and researchers, many of whom may be unacquainted with community perceptions of health or community systems of sharing information, decreases the likelihood that research will be implemented at a community level. This lack of engaged communication can negatively impact community health outcomes. New methods and technologies for respectful and culturally responsive health research results dissemination communication are needed to help researchers engage diverse participants and to improve service to these communities. Reliable health research information supports wellness, but if that information is not presented in ways that are understood and contextualized, it has less community benefit and can also perpetuate widespread misinformation about health and well-being. Though there has been extensive progress with ANAI community engagement in health research, only limited research has explored collaboration specifically with the results dissemination process. Moreover, limited user-centered design research has been conducted with and for ANAI communities. For this dissertation, I developed an Indigenous Community-Centered Design (ICCD) approach to co-design and evaluate an ANAI stakeholder collaboration tool for health research results dissemination and communication. The ICCD approach incorporates community-engaged and Indigenous research approaches with community-centered and participatory design methods. In the first part of my research, in study 1, I used user-centered design approaches to establish a value-informed conceptual framework to support future design activities. Next, in study 2, I integrated strengths-based approaches with participatory design and speculative design methods to co-design a low-fidelity prototype for collaborative results dissemination and communication. In my final study, I conducted a pilot study of the low-fidelity prototype, evaluating it for feasibility and acceptability in ANAI communities. The ICCD approach provides an example of integrating Indigenous community-engaged research approaches with user-centered design, drawing on community strengths. This research supports improved research communication and has the potential to enhance ANAI trust in health research, increasing the impact of health research overall.