Written by: Reema Kadri, rkadri@umich.edu, a Project Manager at the Department of Family Medicine and a staff co-lead with the Behavioral Research Innovation and Support Program (BRISP) at the Michigan Institute of Clinical and Health Research (MICHR).
The full article is available in the Eisenberg Family Depression Center’s Knowledge Base (no login required).
Digital interventions are here to stay! But, how do you ensure your digital interventions are welcoming, inclusive, and supportive environments for research participants? The answer is simple: each and every facet of the research experience should be examined from several key perspectives, and a number of tools employed to address deficits. This is not an exhaustive list, but instead includes examples from various teams who work in this space.
Medical (and Research) Mistrust
If your population includes those who have historically been marginalized or mistreated by the medical field or research, your team must accept that no matter how prestigious the University of Michigan is in this space, or how eminently qualified and recognized the research team members, you are facing an uphill battle to engage. Recruitment and retention will require that your materials and processes build trust and respect autonomy. Research is always voluntary, and taking the time and effort to engage in research for those who, by default, have a diminished desire or faith in the process is simply not optional if you want valid data.
Technology Literacy
Our teams love our technology, and we build and conduct research in digital environments with our shiny toys because we believe, passionately, that they will have profound impact on health and quality of life. But our populations of study may be no where near as tech-savvy and may also simply not trust the fancy gadget you hand them, or even the fancy phone in their own pocket! While the truly tech-illiterate may be a shrinking number in our study cohorts, they are still there, and the range of literacy can vary widely. Think carefully about how you ensure that your digital environments are accessible to those on both ends of the digital divide.
Disability
One of the promises of digital interventions relates to how we can expand access for populations who may struggle to receive traditional medical care. Technology may help reduce in-person clinical care visits for those with disabilities that make traveling to or attending clinical appointments challenging, or provide additional support in managing activities of daily living, which could facilitate greater independence. You do not need to be an expert in this space to do good work here, but you do need to bring in the experts.
Evaluation
Evaluation of your digital environments absolutely cannot be neglected, and should be robust. A single question asking if your study would be recommended to another is a simply useless metric in isolation (and, in our experiences, always results in an overwhelmingly positive endorsement, even in studies where engagement with the digital environment was abysmal.) Instead, build your study team with, or plan to consult heavily with, mix-methods researchers such as those with the U-M Mixed Methods Program who can help you develop a thorough evaluation of each element of your digital environment. This will not only help you answer your research question, and help you understand retention and engagement, but help you plan your 2.0 build to be even more inclusive. Plus, the results of that evaluation will help you obtain the funding for your 2.0 efforts when properly included in your next grant submission!
Full article in the Eisenberg Family Depression Center’s Knowledge Base (no login required).
