Marissa Cummings is a research fellow at the University of Glasgow’s Digital Health & Care Innovation Centre. Although she and I were first introduced to each other through our mutual interest in our shared home country of Taiwan, I quickly realized that her work in accessibility and health care was also of deep interest to me: Her pinned tweet reads, “Why do we even need to say things like ‘inclusive design’ or ‘accessible design’? That should be the default. Force people to say the opposite and be honest about what they’re doing. Exclusive design. Inaccessible design.”
Cummings is precise in her communication, and her current work centers around what she calls “health stories.” We met to talk about the importance of storytelling for folks who are chronically ill or disabled.
The Writer: Tell me a little bit about the work the Digital Health & Care Innovation Centre does.
Marissa Cummings: We’re funded by Scottish governments, and it’s a collaboration between Glasgow School of Art and another Scottish university, which is Strathclyde. We work with partner organizations to kind of help them investigate things or to improve their systems and services. It’s all about understanding how we can use digital tools and digital systems to improve health care and trying to implement in a way that is very patient-focused and not just bringing in a bunch of digital stuff without understanding how it relates to people’s actual care.
TW: One of the reasons that your bio was so interesting to me is that you talk about the value of storytelling in health.
MC: I originally came to Glasgow School of Art to do a research degree, and that was how I connected with the people in the research group that I now work for. They wanted somebody to come in and look at a finding that had come out of a previous project, which was around a need to incorporate health stories into health care records.
They’re not the only people that have found this in their research. There are multiple projects that have concluded that it would be extremely useful to incorporate health narratives into health records because we provide a lot of holistic context, which is really important for delivering care, especially for people who have chronic illness, because there’s a lot of stuff that happens outside of the clinical frame which the health care practitioners might not have any idea of, and it’s really difficult for them to understand the chronology of everything that’s happened when they’re just kind of looking at these very discrete little kind of records.
The way that the system is set up [currently] is really more around treating kind of acute conditions as opposed to chronic illness. [It] doesn’t really support [chronic illness] as well.
After getting into it, I just really became fascinated with a lot of the issues that were involved in it because I think when we’re talking about health storytelling, it’s this beautiful combination of the extremely, deeply personal and then touching on these much larger, wider social justice issues and health inequalities and things like that. So it feels deeply moving and also very important.
TW: I’m currently teaching a class that’s equal parts narrative medicine and pedagogy, but I hadn’t heard the “health storytelling” verbiage that you use in your bio. Tell me more about the idea of health storytelling and what you think the definition of it is.
MC: I’m familiar with narrative medicine. I don’t use that term specifically because “narrative medicine,” I think, tends to be more focused on from the perspective of the health care practitioner and how practitioners can use narrative tools in treating people. Whereas I think there’s a lot of value for people themselves in kind of reclaiming and telling their stories. And that’s why I’ve used the term “storytelling” as opposed to the kind of more general term of “narrative medicine,” just because I think it’s kind of getting into these more personal aspects of storytelling, not necessarily within a clinical setting. It could be used within that setting, but it’s not necessarily about that.
TW: Do you think the value [of health storytelling] is more in the telling of it from the patient’s end of it or in the actual recording of it?
“I think when we’re talking about health storytelling, it’s this beautiful combination of the extremely, deeply personal and then touching on these much larger, wider social justice issues and health inequalities and things like that. So it feels deeply moving and also very important.”
MC: There’s an interesting body of research around the therapeutic aspects of health storytelling in terms of improvement of personal well-being. Just the act of telling your story to somebody else and having them listen to you just makes people feel a lot better, unsurprisingly. Just saying it out loud, I think, is important.
The projects I did for my research degree (which then kind of led into what I do now) – in that project, I interviewed a bunch of people who had chronic illness about their health stories, and then we edited it and put it together as an actual written narrative. So at the end of the project (and that wasn’t necessarily the main outcome of the project, but it was one of the outcomes), they got [the written narrative] back. And I think a lot of people said that they felt deeply moved to actually see their story written down. That was really important to them.
They had never actually told their story to somebody else in its entirety and then actually seen it written down anywhere. So several of the people commented on just how emotional they felt at just seeing their story. And one of them came back to me after the end of the project and said that she actually started to share the written narrative with other people in her family and that it had changed the way that they treated her because it just gave them a whole new understanding of her condition that they didn’t have before. Even people that saw her every day, you know, they may not understand the whole chronology of everything that’s happened.
So I do feel like that’s very important, that physical artifact of that story.
TW: Talk to me a little about the hospital system practitioner’s point of view. What does it look like, and how would it change patient care, to have full health stories, as opposed to more acute data points of illnesses, as you pointed out earlier?
MC: There are a number of different ways that it could affect treatment. From a completely practical standpoint, there’s a lot of information which, generally, about somebody might not be in their medical record or which might be difficult to kind of pick out if you’re looking at this long slew of medical records. It can be hard to get some of these important details about somebody or to understand what is really important to them.
Some examples which come up actually quite often in our work are things like knowing someone’s personal priorities, what are the things that they care about? [This] can actually have a major impact on the type of treatment that they might want to go for. An example that my colleague always uses is somebody who likes to garden, who might not want to get knee surgery if it’s going to affect their ability to do that. Another example which came out of a previous piece of work that we did was around understanding that somebody uses a wheelchair and might not be able to access appointments that require wheelchair access. These practical things are quite important to kind of understanding somebody’s situation, their personal preferences, but also again, because for chronic illness, because so much of it happens outside of a clinical setting, there’s a lot of stuff that might be happening to you, which is not in your medical record at all. So you need this. Some place to put that information is also very, very useful.
TW: You mentioned that health storytelling touches on social justice and equity. Can you say a little more about that?
MC: Especially when we’re talking about chronic illness and multiple chronic conditions, then a lot of that is related to health inequalities: poverty, race, gender. People of color, women, people from impoverished backgrounds are all more likely to suffer health problems and not necessarily receive appropriate treatment. There’s a huge amount of research around this. It’s well known. But I think this is how storytelling can even the playing field somewhat in giving you a space to kind of talk about yourself separate from what’s happening in that clinical setting; reclaiming this knowledge and space for yourself, separate from your health care practitioners.
In the research that I did, a lot of people talked about wanting to use their stories for advocacy purposes, either informally for themselves or just with a friend or family member, saying like, ‘Oh, well, I want you to look at this information about how I’ve been feeling over the past few days; or here’s a journal entry about something that happened to me to convey the reality of the situation.’
But also, storytelling is very effective in advocacy work, so it’s often widely used, and it can make a real personal impact. And if you think about when we think about certain health conditions, it’s people’s particular stories that we remember. People who have written memoirs about their experiences [with] cancer or AIDS, these are the things that we remember when we think about these conditions. And that plays a major part in public advocacy around these conditions and how they’re perceived by others.
Another interesting thing that kind of came up was issues of stigma around certain conditions; feeling embarrassed to talk about your condition with other people or feeling like other people look down on you for it. Using that story to kind of advocate for yourself is just so, so important.
TW: How would someone who wants to advocate on behalf of the people telling these stories help?
MC: There are a number of initiatives out there that are actively collecting people’s health stories. Some nonprofit organizations that work with specific health conditions will work with people that have that condition to kind of record as part of their advocacy work, ask them to write about their experiences, things like that. So that would kind of be a common way of starting to get some stories out there.
That’s something that we shouldn’t take lightly. That you’re giving up your personal experiences for the greater good. So there’s a real responsibility in that. And that is something that we should really deeply honor and respect; that people are choosing to offer up these really deeply personal, sometimes very hurtful experiences.
Often when people tell health stories, they are often about some of the most vulnerable moments of your life. Something that I think is really important to recognize is just how deeply personal that information is that [they’re] offering up. And to really respect somebody who’s kind of taking the time to do that.
TW: Are you seeing more of an interest on the part of the folks who are wanting to tell their own health stories?
MC: There’s been kind of more of a rise of health storytelling in memoir. Especially during the pandemic, it’s almost like nonstop health storytelling, people telling experiences about what’s happened with them, with COVID [or] long COVID experiences, things like that. And because of the unusual situation of pandemic, it’s a kind of collective experience. So there’s a shared understanding in that.
TW: Do you think that will eventually act to make people feel better about telling stories about other health conditions that might also be stigmatized?
MC: Honestly, I’m not sure. It certainly has had an impact on certain conditions. For example, myalgic encephalomyelitis (sometimes also called chronic fatigue syndrome), because that’s been linked to long COVID, [is] suddenly receiving a lot more attention than in the past. That’s been kind of interesting, to see how a condition that never really got a great deal of respect or consideration has suddenly moved up to the top of the priority list. So that has definitely changed. [But] generally speaking, I’m not sure.
Yi Shun Lai is the author of Pin Ups, a memoir. She teaches in the MFA program at Bay Path university and is a founding editor of Undomesticated Magazine. Visit at undomesticatedmag.com.