JMIR Publications

ABSTRACT

Background:

Existing research methods often underrepresent individuals from historically marginalized communities. This is true across health care, including serious illness research. It is difficult to capture the nuanced perspectives of many individuals around their health care experiences that affect efficacy of communication, shared decision-making, and other serious illness interventions. New research strategies are needed that increase engagement of individuals from diverse backgrounds.

Objective:

We describe a mixed-methods approach including qualitative online forums, used to better understand health experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals, older adults, and people with low income, disability, or serious illness.

Methods:

We used a mixed-methods, community-informed research approach to design study instruments and engage participants. We conducted a national quantitative survey between April-May 2021 and two asynchronous, qualitative online forums between June-August 2021 that allowed us to contextualize learnings and test concepts and messages. Online forums are a technique used in market research, and we oversampled individuals from historically marginalized groups to ensure we heard varied perspectives. Using online forums allowed us to probe deeper into questions, results, or hypotheses generated from the survey, allowing us to better understand the “why’s” and “what's” that surfaced and test different public messages to encourage action around health.

Results:

We engaged 46 community partners, including patients and clinicians from a federally qualified health center, to inform study instrument design. In the quantitative survey, 1,854 adults responded, including 50.5% women, 25.2% over 65 years old, and 51.9% with low income. Nearly two-thirds identified as non-Hispanic White (65.7%), while 10.4% identified as non-Hispanic Black and 15.5% as Hispanic/Latino. An additional 580 individuals participated in the online forums, who were 60.7% female, 17.4% over 65 years old, and 49.0% had low income. Among participants, 70.3% identified as non-Hispanic White, 16.0% as non-Hispanic Black, and 9.5% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the online forums.

Conclusions:

With intentional efforts to oversample people from historically marginalized communities in our online forums, we achieved modest overrepresentation of people who were over 65, identified as non-Hispanic Black, and had low income. The size of the online forum (n=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Nonetheless, individuals who identify as Hispanic/Latino remained underrepresented, likely due to limitation of online forums being offered only in English. Overall, this shows the feasibility of using the online forum qualitative approach in a mixed-methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions.