Abstract
I entered my in-person PhD program in the fall of 2019 just before COVID-19 hit. Interested in studying aging and cognition in older adults, I joined local research studies with experts at my research-intensive university in order to learn and gain experience. My first job as a graduate research assistant involved conducting quantitative interviews over the phone during COVID-19 in the spring when face-to-face research became restricted (The University of Texas at Austin, 2020). The participants were older adults whom I had never met, of course; I would call them up from my contact list and state the reason I was calling and what I wanted to ask them, “How has COVID-19 social distancing affected you?” (Fingerman et al., 2020). These contacts were from a previous study performed by my faculty member, the Principal Investigator, 4 years prior. Some contacts had died; others didn’t remember the original study, but many wanted to participate. From my home office, I used Qualtrics (2020) for the first time as I asked the questions and filled in their responses to each question using this free online survey software from my laptop. It went smoothly and I noticed some of the older adults relished the opportunity to talk to someone with some interviews continuing on for quite a while. That summer, I joined another virtual study interviewing older adults with multiple sclerosis who had been participating in a longitudinal study for 24 years. Immediately, the participants seemed comfortable with my qualitative questions as I asked, “How has COVID-19 social distancing affected you and your health?” Of course, these participants have known the research team for years and immediately opened up to share with me. I was astounded by their resilience in dealing with the pandemic. Finally, in the fall of 2020, I joined my next project where I conducted virtual qualitative interviews asking caregivers of persons with dementia, “How has COVID-19 affected you and your loved one?” Their answers made me sad. It seemed the social isolation had significant negative impact on their sense of well-being in addition to affecting the behavior of their loved ones.
All of the data I have collected as a research scientist has been remote and I have learned, phone interviews are an art. I am curious, “How does an interviewer establish trust with an older adult over the phone who is asking personal questions of them?” We know establishing rapport with participants is incredibly vital to making a connection for the purpose of collecting rich and meaningful data (Knox & Burkard, 2009) but even more difficult during times of uncertainty where participants may be feeling more anxious and distrusting of strangers. If you cannot make that connection, your data could be flat or dull. Considering our persistent restrictions with the continuing pandemic limiting our data collection of vulnerable participants to the community as opposed to long-term care facilities (Center for Clinical Standards and Quality/Quality, Safety & Oversight Group, 2020), what if this is the only kind of data we can collect from this older adult population for a long while? What about the threat to internal validity? Will data collected now reflect the landscape beyond COVID-19? Also, if the interviewer is unable to establish a sense of trust with the participants, just think of using that limited data as the only source to analyze and discuss—Isn’t a study only as good as the data? This will most likely shift the knowledge created. Enter bias. How can you control for this? Of course, if these are long-standing participants from a longitudinal study, trust has previously, most likely, been established. This is what I found to be true during my COVID interviews. The participants from the longitudinal study sounded more at ease with me than the ones on my previous study; they were able to converse easily based on the fact they had long-standing relationships with other researchers on the team. This helped immensely and makes longitudinal studies even more valuable!
So, I am now a research expert on virtual COVID-19 interviews—or at least I feel like I am. But I wonder, will I ever get to conduct a study in-person? What does the future of nursing research look like? How will virtual data collection affect our students, our funding, our investigators, our scientific results, and our participants? Thanks to telephones and computers with cameras, patient interface can be performed virtually. But what about biological and physiological measurement collection? Blood and urine samples, and vital signs can’t be taken through a common phone. What about the labs, with limited operating restrictions? In our current research phase, time-sensitive research operations have resumed (The University of Texas at Austin, 2020) which allow previously collected bio-markers and other important data samples, sitting there since before the pandemic started, to be processed. However, with the current COVID-19 cases rising, increased restrictions could be issued again. Some of my team members working on this type of data collection are very frustrated.
Technology, again, saves the day, or does it? This is an opportune time for wearables and mHealth (mobile health) data collection and analysis as it is anchored in technology but what about the drawbacks? Mhealth applications are accessible to many individuals; educational and informative; paperless and easy; encourage healthy behavior; collect a powerful size of data; and people are generally receptive to them (Schairer et al., 2018). But how do we know, exactly, that people have consented properly (i.e., chose “agree” AND read all of the long, fine print) when they downloaded the application? Do they know who will handle their sensitive data and for what purpose? Mhealth may further drive the disparities divide (Nebeker et al., 2019) as it may not be accessible to everyone. Further, are the data accurate without bias? The crux of the issue with mHealth is that commercial enterprise’s motivation is to turn a profit while researchers want to further the science. In addition, researchers have a strict, ethical code to adhere to when conducting research but commercial companies are often unregulated (Schairer et al., 2018). How can the two be intertwined in an above-board fashion so that we can utilize this accessible method of collection? The two must find a way to create a transparent and safe practice of data sharing with conscientious privacy policies engaging individuals as partners and not as human subjects. For purposes of data sharing, the National Institutes of Health (2020) have funded free, online tool kits that provide standardized procedures for measures and data collection which provide a way to contribute to an online data repository. These standard data collection protocols have been created to involve the scientific community and have the potential to increase the impact of individual studies, increase statistical power, and provide a way to validate results through study comparisons (Hamilton et al., 2011).
So, we will use technology to help bridge this social distancing gap; however, technology is far from a simple solution. Obstacles can include budgeting for newly needed technology, struggling with technology supply choices, WIFI and connection problems, and technological expertise and troubleshooting. Researchers have to choose the technology, pay for the technology, share the technology, ship the technology, learn how to use the technology, figure out how to teach someone else how to use the technology and then troubleshoot when it doesn’t work. Virtual data collection is making the researcher’s role substantially more complex and time-consuming.
What are we as nursing researchers to do? We must jump in and swim with the current. This is a fast-paced learn and go season. The pandemic may not be leaving anytime soon and we are forced to meet this challenge and find solutions in the middle of a storm of anxiety and uncertainty. Trial and error. Repeat. Research leaders are known to be able to lead a team of scientists, understanding the process of dividing up the work amongst the team members to accomplish a mutual goal. Data collection during this pandemic is exactly that – we must work together as a team, sharing resources, sharing technology, and exploring creative solutions with commercial technology experts. We must learn on the job and help each other for the sake of science in order to protect our vulnerable populations. Incorporating multiple disciplines is a good way to address our questions considering different perspectives. It’s a good thing nurses are equipped to handle difficult situations. We will accept the challenge of this new landscape and we will succeed, but only as a team. Transparent, trustworthy, strong, diligent, tenacious, and problem-solving. These are unusual times and we need to forge ahead, together, continuing to learn as we go utilizing technology and team science but with our strict adherence to ethics as researchers. The upside is, participants are having to be hands-on in a much more active role in data collection utilizing the technology. The downside is, it’s becoming more difficult to locate those interested participants (especially tech-savvy ones) and we may all pull our hair out figuring out how to do this.