A new study from the University of Arkansas for Medical Sciences shows that limited access to digital resources may play a role in rural cancer survivors being underrepresented in cancer research. Pearl McElfish is the founding director of the Institute for Community Health Innovation, and she recently spoke with Ozarks at Large’s Matthew Moore about these findings. And she says she wasn’t necessarily surprised by the results.
McElfish: It is intuitive that older people may want mail-in options. I think the challenge is in research, we’re often moving to digital platforms, and then we look at the results and we say, well, most people are younger, higher educated and in urban areas. And so we’re missing rural, older and sometimes less educated people. And we talk about that as though it’s a barrier we can’t overcome. And what we’re excited about with the results of this study is really to indicate that if researchers are more flexible in their measures, and, for example, we offered mail-in, phone or email digital options, they are more likely to capture a broader, broader sample. And that broader sample is really critical to having all voices heard.
We really need to understand what rural people, and in this case, rural older adults need in order to really address cancer or diabetes, cardiovascular disease or really any disease state.
Moore: And I feel like that’s especially critical in a state like Arkansas that is so rural as a state as a whole.
McElfish: Absolutely. At the Institute for Community Health Innovation, we focus on meeting people where they are. And this is a very rural state. And so part of meeting people where they are is not just presuming that everyone is comfortable with digital technology and understanding some things like snail mail may actually work better for some people. So mail, phone service, things that we often don’t think about because we’re so focused on digital technology. Some of those options are much better for rural participants and much better for older participants.
Moore: Let’s talk a little bit more specifically about maybe the pros and cons of, say, mail and phone. We talked a little bit about you are finding that you’re getting better results. You’re getting more participation in that way. What does better participation mean compared to, like, what’s the ratio here of the three, if you can?
McElfish: Yeah. So rural participants, regardless of age, were more likely to prefer mail-in and phone. And then older adults, regardless of rural or urban, were more likely to prefer phone and mail. And so when you combine that, there was an overwhelming preference for mail or phone over the digital technology. The why that is important is that research is used to make clinical decisions as well as policy decisions. So if we put out results that say cancer survivors need whatever it is, and that only includes younger and more urban cancer survivors, we’re going to miss the needs of most cancer survivors who are older and rural. And so it really does matter when you’re doing research that you get as diverse participation as you can. And as we discussed, in a state like Arkansas, where more than 44% of residents live in rural areas, if we are really focused only on more urban participants, we are not going to really address the needs of our state.
Moore: I imagine that there are some drawbacks to doing mail and phone compared to digital. Can you articulate some of those? What are some of the cons of having this as a preference?
McElfish: You really have to invest a lot more time and therefore money in those elements. So even though they may be seen as more basic or rudimentary, if you get a paper survey back, you have to then enter that data digitally, and you have to double-check it. And so that’s much more time-consuming. Some would argue it’s more prone to errors as opposed to someone just being able to type in information directly themselves. Similarly, with phone, you have that same component of it’s not just the participant entering it, but you have that intermediary on the other side.
What we found, particularly with the paper surveys, and this surprised me and the rest of the research team, is that many participants would turn the paper over and handwrite information. And so it provided this opportunity for them to elaborate on those elements that meant the most to them. And so that was really quite surprising. And I think the takeaway here is that it may take more time and cost a bit more money, but the value of including rural participants is really important and critical to having results that can translate into rural Arkansas and really the rest of rural areas in the United States.
Moore: Yeah. How do you involve that kind of unexpected qualitative data into how do you maybe find ways to create that sort of opportunity in a digital capacity? Because, you know, I have done phone surveys before and I find that I overtalk and I probably say more than I need to say or is expected of me to say. And for some, in some capacities that may be helpful. In a digital capacity, it may not feel as mandatory or as you know, you’re just doing a thing to do a thing and you move on. How do you find ways to create more of those accidental qualitative opportunities in the digital form?
McElfish: We love mixed methods research because we do think it is critical to allowing people to have their voice heard in their own words. So even in the digital options, we ask questions that are open ended, and we have several points at which we ask, is there anything else you would like to say? Because I do think it is critical for people to say what’s really on their hearts and minds, even if researchers didn’t answer that.
However, even though that’s available in the digital option, we did find that people who were either writing on paper or particularly the phone calls were able to expound more than they would when they were typing. And it’s a really fascinating part of the methods of this study. And again, the takeaway message is by offering people the option they choose to respond the most, you will have richer data.
Moore: When you think about the lessons you’ve learned here in this specific study, especially thinking about rural cancer survivors, how do you translate this into other survey work you do outside of cancer?
McElfish: There are two major takeaways that we are taking into all of our other studies. One is that all of our studies have open-ended responses, and they are open-ended responses that might ask, how do you feel about the services you’re providing? But then there are also open-ended questions that say, is there anything else you would like to tell us? So those open-ended responses, regardless of what mode, are really critical to having people’s voices heard.
In addition, if we are trying to reach rural participants or if we are trying to reach older participants in particular, we are using multimodal and including that paper option and including that phone option for older adults and particularly older rural adults.
Moore: When we think about this specific research around rural cancer survivors, what’s something that came from these other forms that was very unexpected and very illuminating?
McElfish: Rural participants and older participants want their voice to be heard. And I think we often term these participants as hard to reach or assume that they don’t want to participate. And that is really inaccurate. And blaming the participant for the lack of participation when the burden really should be on the researcher to meet them where they are and allow them to participate.
Overall, in this cancer study, we interviewed both cancer survivors and cancer caregivers, and we’ve published several papers that demonstrate some of the financial hardship of rural cancer survivors and the needs of cancer caregivers, so that we hope that this research can inform policy and practice in Arkansas and across rural states in the United States.
Moore: For groups, nonprofits, individuals who are looking to do studies, whether they’re doing it on a larger scale or a smaller scale, what do you hope they can take away from this sort of information?
McElfish: I wish researchers and health care organizations would really remove the term hard to reach from their vernacular, because that really gives us an excuse to not use the methods to go where people are. And so I think the biggest takeaway from this study is if we are willing to be more flexible and give patients and participants options of how they communicate with us, they really do want to have their voice heard. And so again, if we can stop saying hard to reach and really be willing to go where people are and provide multiple methods for people to communicate with us, we will really reach populations who are often disenfranchised and set to the side. And those are the communities that we must reach in order to solve the health disparities and the health crises that Arkansas and other rural communities are facing.
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