Marginalized Seniors: Access to Health Care Information “We need to give people enough opportunities to get the information they need in the way that they want to receive it.”

Linda Crosby, Donna Sevenpifer, and Megan Anderson are research curriculum librarians at Fanshawe College in Ontario, Canada. This story captures their reflections on Digital Inclusion of Marginalized Seniors: Access to Health Care Information, a project they designed and led, which received support from eCampus Ontario.

Digital Inclusion of Marginalized Seniors

This project focused on the access and adoption areas of digital inclusion. Access research focused on the barriers faced by seniors from further marginalized groups in their attempts to become digitally literate. The three marginalized groups researched were Indigenous, immigrant, and rural seniors, and their digital literacy in relation to health care information is the focus. Findings from this research were then carried into adoption research, which focused on how the aforementioned barriers impact seniors’ ability to become digitally literate.

Evidence

Linda and Donna’s Story

To start off, would you please introduce yourselves and give me a broad overview of the work you do and, and then tell me a little bit more about the project.

Linda: I’m Linda Crosby. I’m a research and curriculum librarian here at Fanshawe. I was the project lead of our team of three. What I do mainly here at the college is go into classrooms and teach information literacy to our students. We work on collection development and try to make sure we’re on trend and that our services and resources fit in with what’s happening in libraries these days.

In terms of the project, it stemmed out of the interest in digital inclusion, which is important to us. We had also been working in different capacities with faculty as they are putting together their research projects — that intrigued us and we wanted to get into that research aspect of a librarian role. I also have a background in health libraries having worked in a medical library for a number of years. So that’s how part of the health information aspect of the project came in due to that interest.

Megan Anderson, who’s not here today, has a background in Indigenous studies, having worked at the University of Winnipeg leading that unit in the library there. That built in another aspect of looking at the marginalization of population and she’s very passionate about that. That came into play, too, as we were putting this project together. As librarians, we’re interested in people’s access to information, information literacy and overall getting their hands on information when they need it.

Donna: I’m Donna Sevenpifer. I’m the third research and curriculum librarian here at the college. Prior to becoming a librarian, I spent many years working with adult learners of English as a second language. Perhaps more relevant to this project, however, was my volunteer experience both when I was a new teacher and new librarian. I spent quite a bit of time volunteering specifically with senior newcomers to Canada. At that time, I witnessed firsthand many of the struggles that seniors in this group were experiencing. Just trying to maneuver through their daily lives was difficult, often due to limited literacy skills. That aspect, and specifically potential struggles with digital literacy, was my area of interest in this project.

It sounds like between the three of you bring a lot of diversity in backgrounds to this work. Let’s get into the project a little bit. A good place to start is a moment of pride or success that you’ve had in this work.

Linda: For me, as project lead, it was seeing what we planned come to fruition and see it in play. Once we set up the plan and assigned responsibilities, it was great to see how everybody went with that and made it happen. For me that came to life when we would be at a survey site and I would see these guys interacting with seniors and feel like we were bringing a bright spot to their day. There was one person who did the survey whose son had passed away the day before. It was feeling in that moment that to some extent, regardless of where the project went and what the results were that we were having these small moments of impact, hopefully positive, on people’s lives. When I could look back and see what our team was accomplishing, seeing Donna go off and do the surveys and Megan go off and organize something else, that to me was when I felt we were being successful with this project.

Donna: I would absolutely agree with that. I value the connections that I made with my coworkers. We work really closely together on a daily basis, but this was an opportunity to connect in a different way. As well, it was very special to have the opportunity to work one on one with so many seniors, to be a bright spot in their day, or maybe even somebody that they could vent to a little bit. When a senior realized that, ultimately, we were going to try to advocate on their behalf, there were some candid conversations. And very impactful moments.

You say advocating on their behalf — can you give me a little more detail about that?

Donna: What comes to mind are some of the recommendations that came out of the research project — the need for freely accessible, credible and trustworthy health information that seniors can access online. We also advise that these resources are accessible in terms of format and language.

Linda: One of the recommendations I remember is bringing something like a consumer health database more in line, more available throughout the province, even potentially to individuals. We’ll probably talk about it a bit more, but in terms of actually getting those recommendations in place and the way that we would like to advocate is still to come.

The flip side of what we just talked about, the pride and successes, are the challenges and the moments of frustrations. Do either of you have something to share about that?

Linda: There’s always that flip side. One of the populations we were really interested in was the indigenous population and a disappointment that came out of that was not being able to make those research agreements with that part of the community. Megan was, as I said, very passionate about that. So it was both with some frustration that we couldn’t make that happen, but also with an understanding of things that they would be concerned about and that would hold them back. Our intent was always to try to advocate on their behalf, but their hesitancy was also understandable.

We found that sometimes asking to partner with a group or an organization happened like a finger-snap fast, and then other times it was a bit like pulling teeth. There were a few times where we weren’t successful.

We also had the situation where we found out that we were funded by eCampus Ontario less than a week before college faculty went on strike for five weeks in the fall of 2017. We found that out just as we were flying out the door to be on strike and walk the picket line. Knowing we had this to do, but we weren’t supposed to be doing any work was difficult. Then getting back and the timelines for getting a REB approval and those kinds of things were definitely challenges. But I have to say that eCampus Ontario was very understanding and supportive of that and absolutely met us at least halfway if not more in trying to get our timelines to still work out given that big gap of time when we couldn’t work on it.

Donna: I’d like to say something specifically about our survey findings. I thought it was really interesting that many of the seniors that we surveyed asserted that they’re always able to find excellent sources of information, or that the sources that they come across are very trustworthy. That sounds like a very good thing, but at the same time, as librarians, we sometimes worried that maybe there was a little bit of overconfidence going on.

On the college campus we see that a lot — our students often display these tendencies. It’s like the old adage that you just don’t know what you don’t know. Wondering if some of that same overconfidence is being displayed by the seniors. On that note, one of the recommendations that we made is that the seniors could, hopefully, be provided with opportunities to both learn how to effectively search for health information online, as well as learn how to evaluate it, so that they can ultimately find something really trustworthy and credible. If we’re talking about health information, this is very, very important. We don’t want anyone to put themselves at risk.

The evaluation piece is so critical these days so that’s an interesting challenge you bring up. Tell me more about any significant relationships or connections that have emerged in your work with this project?

Linda: We definitely made a lot of connections and I see how being able to pull on that network down the road is going to be potentially a really cool thing that we can take advantage of in many different kinds of aspects of what we do, and what services we provide. But one of the relationships we built with this project was with an organization that’s called the South London Neighborhood Resource Centre and it’s amazing what they do. They pull in all kinds of different segments of the community — seniors, immigrants, young mothers, people seeking jobs — the list goes on and on. We thought, well, we were wanting to certainly find places where seniors hung out and we were interested in immigrant populations – let’s reach out to them. And they embraced us with open arms and gave us so many opportunities to survey there with their different groups. I think we had six or more survey sessions at this one location when they knew different groups would be coming in. They are a key element to the success of the project because of all of their connections and we can’t thank them enough for that. It became like we were like old friends when we went there. Without their involvement we would not have been as successful.

Donna: I agree, we wouldn’t have had so many survey respondents.

Are there any colleagues at the institutions that you’re working with that you think were affected?

Linda: Some of that is to come. One of the other key partners we worked with were the county library systems as part of trying to include the rural population. That’s where there may be opportunities for us that relate to the project but also to information literacy within libraries, with rural students who are going to head into the college in the next year or so, that kind of thing that is not necessarily closely related to this project. Having built those relationships we could pursue that.

What were the key activities or outcomes that came out of your project and how did they evolve from what you originally envisioned? But to start, what would you rate as the outcomes?

Linda: That’s a tough question because I don’t think we’ve moved as far along as we would like to so that is how it evolved differently already. We ran into a bit of a situation here just as we were wrapping up the surveys and getting ready to write the report. There were some significant staff changes in management and that immediately grabbed our attention away from this project — we finished up what we had to, but then focused on what was happening internally. So we’re disappointed that at this point we’re just now getting stable again, and that we haven’t been able to follow up the way we would like and to see how we can pursue the recommendations we made. Our plan had been that we would get the report out to these partners and then the follow up would be to say, so what do you think about these recommendations? How do you think we could work together to put those forward? And then contact other agencies like the Age Friendly London initiative that weren’t involved in the survey side of things but would be instrumental in actualizing anything that happens in the London area. That is where we want to go but we have had our heads in different places over the last several months unfortunately. We’re ready to regroup.

Semi-related, as you’ve been working on this project, was there an assumption that you had earlier on that has since proven to be incorrect or not what you expected?

Linda: A broad response to that would be that we had our ideas about marginalized people, and seniors specifically. What we found from the survey results was that they did exist, sometimes in some ways and not in others in terms of access and use and comprehension and all of those kinds of things. Those factors were things based upon whether they were rural, urban, immigrant, indigenous seniors as opposed to what could be considered the typical or average senior. But what we found were that there were other areas that were to some extent more socioeconomic in terms of their income and the age of the senior — those kinds of things became as important as some of the other things that we had focused on. ‘Surprised’ might be too strong a word, but the strength that we saw in the importance of those aspects was something that I had to stop and consider, having been down the rabbit hole of the focus we had originally and to then come back out and see how that all worked together.

Donna: Something that I had not quite expected was the large number of seniors who have a lack of interest in going online to access information. I was anticipating a lot of “I would like to but I have language difficulties” or “I would like to but I don’t have internet access”. But we had many seniors say there just wasn’t any interest in going online. We’re not quite sure if possible incentives will work or not. We’re curious about that — if their answers might change if some of our recommendations were put into place.

That is surprising. Were you able to see in the different populations of seniors that you were studying if there were themes within those groups? Could you drill down any further or was that a broad observation?

Donna: It was a broad observation, but I would say that the more elderly seniors are the ones who are least interested in going online. Maybe they just don’t see the value in learning a new skill at this stage in their lives. It’s hard to say why.

Linda: One of the things we talked about is having a longitudinal study to see if in another five or 10 years we see that same kind of representation happening. Regardless of anything else, is it as people get to be 85, 90 years old, they’re like, no! Or is it because the younger seniors, those who are 60, 65, have used computers more in their jobs perhaps than the 90 year olds. Will that be the same or will it just kind of blend out in another period of time? We identified that that finding might only be relevant now and for the next few years. So what to do about it?

Donna: More research!

That segues perfectly into my next question, which is what’s next for the project.

Linda: We definitely want to get to where we were back in April or May when we wrapped this up and reach out to those partners and those other community agencies that we’ve been in contact with to see what opportunities are there for moving forward, either with our involvement or if they have made plans of their own. I wouldn’t be surprised to hear that this has happened in some cases. South London Neighborhood Resource Center may have already done something with it. We also were in contact with the Seniors Health Knowledge Network, that tries to make sure seniors have opportunities to access the information they need. They apparently run a series of webinars so we think that might be in the plans to further disseminate what we’ve done here. We’re looking at opportunities at library conferences. Here at Fanshawe we have a research and innovation week. It used to be a day and now it’s a week. We are planning on presenting our research there, probably putting together a poster for that. In a nutshell, we want to make sure it becomes well known so people can make use of it as they will, but also have more formal follow up with our partners to see where we can go with it.

Are you interested in growing the scale of the project to reach more people or to reach different kinds of people?

Linda: We do have some interest. We’re also toying with other research ideas. We’ll see what filters out of that. I think where my interest lies in pursuing it would be probably waiting a period of time to see if some things have shifted. Because of the question about will most elderly seniors in five or 10 years time still be as reluctant to use the Internet for health information as they are now? I’d like to know that. But as well we’ve had a fairly big influx of immigrants into the London community lately, so to see if down the road that has a different impact, I think that would be interesting. And also opening up our definition of marginalization to include those more socioeconomic factors as well. Still, we feel pretty strongly and committed to the literature that we found as we started this project: Don’t treat all seniors the same!

Is there anything at the institutional level, like processes or integrations or practices, that you’d like to share within your institution?

Linda: That speaks to digital inclusion across society. One of the takeaways for me was that we need to be more vigilant about making sure what we practice here at the college is giving people enough opportunities to get the information they need in the way that they want to receive it.

Donna: I would just chime in and say again, one of the barriers identified was that cost factor — a lot of that good health information is locked behind a paywall. So again, advocating for better, more open access resources for seniors. As librarians, we definitely advocate on behalf of our students as well. There shouldn’t be the information privilege that there is. We want all citizens, all students, all members of society to have access to good, trustworthy, free information. So we’re participating in different initiatives here at the college to advocate for that.

Linda: There’s certainly the open access movement in libraries and in publishing. Megan and I wrote an article on another topic and we want to make sure it’s going to be published in an open access journal. Just taking that mindset and having that be one of the criteria or filters that we look at, when considering things like library collections. As well there’s the open education resource movement. This lit a bit of a fire under us that yes, we need to be more involved in that too because, let’s start out with the population getting their hands on the information they need as soon as they can. We’re dealing with not just a young population at our school, but let’s make sure it’s starting so they can understand that process and that method of accessing information. Maybe by the time they’re seniors they’re involved in and engaged in how that all happens and how they can get the information they need. So it’s a ‘start now for a lifelong benefit’ for the students we see here day in and day out.

Donna: Another thing that comes to mind is the accessibility piece. Many seniors we surveyed stated that they had difficulty navigating websites, often because of poor layout, often because of font size. In other words, they had trouble seeing the content. One of the recommendations is that online health resources created for seniors uphold the standards of universal design and best practices for effective usability. At the same time, this isn’t just a problem for the older population. At the college, more and more students each year are registering with Counseling and Accessibility Services. Many of these students require assistance because they have a visual impairment or other physical condition which requires that they be provided with material in alternative or specialized formats. As librarians, we need to keep that in mind as part of collection development and shoulder the cost of providing alternative materials if necessary. The student — or senior as the case may be — should not have to pay.

Your answers are really interesting because you bridged the open resources and open access with inclusion. The resources and the people that use them. I’m curious, is there a greater efficiency or greater access to these materials? Do the inclusion practices that you use support that?

Linda: I would say yes, they do. One of the specific recommendations that we have that we haven’t yet operationalized is that there is a ton of great information that’s available through open access, but you need to have somebody organize that for people’s consumption. You need to have that curated. And not just college librarians, but librarians as a whole, that’s a big role that we can play in making sure that what is out there can be readily and easily accessed and used and understood by seniors specifically.

Donna: I would agree with that as there were many survey comments about the overload of information. So having that highly curated collection of open access resources would be really useful for seniors.

Linda: That’s on our to-do list here, to make sure that we’re starting that here now, too. There’s stuff out there we need to get that into the hands of the people that will use it.

Your answers so far have really demonstrated a deep personal commitment from both of you towards this work. I see the passion, so I want to hear it in your words: Why do you do this work?

Donna: Ensuring free and equal access to information is a tenet of librarianship.

Linda: It is! It’s part of what you learn in library school. People tend to be drawn toward the work and to the education required to do it because they have some of that passion already. In library school it is made a very solid part of what your practice should be all about. I think we have a passion to make sure that good information gets to the people who need it. And part of the struggle is that there are also publishers in that mix trying to make money. I’ve been around long enough that I’ve seen seen it go from people being able to walk into a library and pull a journal off the shelf and read it to that only being available if you are allowed to log in to a computer. That is against everything I believed in before I went to library school, but certainly after as well. Get the information to the people. You know the old saying: Knowledge is power.

Donna: Everyone deserves to be given that knowledge.

Is there anything more you want to tell me about your involvement with the project or the project itself?

Donna: Again, I would love to express how happy I was to be part of this project. As academic librarians at the college, we often work with our fellow faculty. We assist them with their research endeavors. We all, in theory, understood the research process – submitting for funding and submitting for REB approval, etc. To then be able to go through that ourselves for own research project, that was a really strong learning experience. I think that we’ll be able to bring that to our future work. We’ll be able to be better partners in that research process with our fellow faculty. It was a great learning experience.

Linda: Absolutely. I would agree. It was the first formal research project I was involved in. So all of those steps along on the way, it was really good to be doing that firsthand. I know that since then, I’ve worked with a few faculty where they’ve been in the middle of that process, too, and there’s just a stronger partnership with them in terms of being able to do that. It also sparked for me a bit of that passion again for this topic, but also for other ways that I should be contributing to the profession. It sparked the interest to really be pursuing more research opportunities and that kind of thing. To potentially make a difference, make things better or easier for people with information needs. I’m looking forward to seeing some real-life instances of where they have taken any of our recommendations and actually made them happen. So hopefully a year from now if we were to interview again we would have a list of some of those things!

I hope we have the occasion to do that because your work sounds both interesting and important to the communities you serve.

 

Copyright

LICENSE: Copyright eCampus Ontario. Published by Loup.Design on StoryEngine.io with permission from eCampus Ontario. This content may be further remixed and distributed under a Creative Commons Attribution-Non-Commercial-ShareAlike-4.0 International license.