Assistant Editor Bryna Siegel Finer’s interview with author Sarah Ann Singer on her forthcoming essay “Patients as Researchers: Chronicity, Health Data, and Emergent Attribution Practices”
Posted March 2022
Sarah Ann Singer, University of Central Florida
Bryna Siegel Finer, Indiana University of Pennsylvania
Siegel Finer, Bryna. (2022). “RHM Author Interview: Sarah Ann Singer, Ph.D., author of “Patients as Researchers: Chronicity, Health Data, and Emergent Attribution Practices,” Rhetoric of Health & Medicine: Vol. 5 : Iss. 2.
Read below or download here.
1.We’d love to hear, on a more personal level, how you got started on this topic. What interests you specifically about patient data registries?
I became interested in patient data registries through my dissertation research on Lyme disease. As I learned more about the condition (beyond my personal experiences with it), it became clear that patients were recording and sharing their own data to help each other manage their symptoms. Since Lyme disease is so contested and patients’ experiences do not always correspond with the data coming out of clinical research studies, patients feel forced to intervene in whatever ways they can in the research realm. I wrote an article for Peitho about MyLymeData, an online patient data registry for Lyme disease patients in particular, which was published in 2019. I learned that MyLymeData was part of a larger organization called Invitae, which hosts many other patient registries. I got to looking through the list and was surprised to see so many rare conditions on it. As I clicked through the links, I learned how many patient data registries existed and started to wonder what, exactly, happened to all of the data that people shared with them.
Concurrently, part of my interest in patient data registries stemmed from my lifelong interest in research (in all of its forms). Whether I’m looking for the latest research on Lyme disease, the best pair of leggings for the cheapest price, or the most authentic North Carolina-style barbeque outside of North Carolina, I’m always searching for something. Patient data registries—from my perspective—bridge the gap between scholarly and other types of research. I drew on these “mixed methods” when a few people in my life gave birth to children who were ultimately diagnosed with extremely rare chronic conditions. (Coincidentally, all of this occurred around the time of the Chronicity CFP.) In one case, there are only 30 or so documented individuals in the world with one of the conditions. These difficult situations required that the new parents become researchers immediately. They videotaped their babies’ movements to document potential seizures, experimented with feeding them in different ways to help the babies gain weight, and documented the babies’ activities so they could share as much information as possible with specialists. The parents (and the healthcare providers) often could not rely on clinical trial data because these rare conditions were not common enough to necessitate clinical trials. Sometimes the best information they could find was on personal blogs. When information was available on sites like Reddit or Facebook groups, it was a huge bonus. In a way, I wrote this article with these people in mind.
- One of the strengths of your piece is that it makes a strong contribution in terms of methods, especially in your use of peer-reviewed articles as artifacts. If you were to explain this approach to novice researchers in a way that would be aimed at helping them to use peer-reviewed journal articles in this way, what would you say?
RHM scholars often begin research projects in response to communication problems that we see in health, science, and technology spheres. Unfortunately, it can be difficult to connect with practitioners and scholars in these fields because our research methods are so different, even between adjacent fields such as English and Communication Studies. However, nearly all scholars share a common genre: the peer-reviewed journal article. By nature, peer-reviewed journal articles are meant for fellow experts in the field and—at least from what I understand—are not widely read by people in other fields or the general public. This makes them largely inaccessible to nonexperts and scholars in other fields.
And yet, based on our training, rhetoricians are powerfully positioned to study peer-reviewed journal articles as artifacts for several reasons. First, we have access to them through our university libraries—and if our own library can’t access something that we need, we can usually request it through Inter-Library Loan rather than renting or purchasing it ourselves. Second, we have a chance of understanding peer-reviewed journal articles because of our training in rhetorical genre studies. I am clearly not equipped to understand the intricacies of particle physics research, but peer-reviewed journal articles are generally written in the IMRAD format (introduction, methods, results, and discussion), so at least I can parse the different sections. We can use scientific glossaries and medical dictionaries to look up terms and concepts with which we are unfamiliar, and in the case of many human subjects studies, we can understand the basics: how many people participated, why this population of people was selected, what issue was studied, and how the participants faired after the study. In all, these factors render peer-reviewed journal articles as artifacts available to RHM scholars. I hope that others will look to them for future projects!
3. If I were teaching your article in a rhetoric of health and medicine class, what would you want students to know about it? Or said another way, what would you hope they’d take away from your work?
I would want to emphasize how much health data privacy matters! Please read the Terms of Service agreements before you “acknowledge” them and go about your business. Please read about the patient registry or platform before you download it or add your data to it. (After all, patient registries can come in the form of apps, websites, private online groups, Discord communities…the list is endless!) Robert Johnson’s work on user-centered technology rings truer than ever. To summarize one of his many essential points, our “mundane” interactions with technologies (such as patient data repositories) can be the most insidious. What, specifically, are you consenting to when you choose to use this platform? What, exactly, is this platform doing with your data? More of these registries and platforms pop up every day, and it’s tempting to join them. It’s easy to sign up. It’s easy to input your data into a user-friendly interface. It’s neat to learn about other people with the same health conditions as you and how they are coping with the condition, the medications they are using to treat it, etc. In a world where we are forced to be our own health advocates and compelled to take responsibility for our care, we may feel like sharing our health data is the only thing we can do to get better. But as Eric Topol wrote in this viral tweet, “your medical data is precious” and you shouldn’t share it without a lot of consideration.
- What would you do differently about the whole project? Now that you have parsed the data and findings out into this article, would you have set it up differently knowing what you know now?
There is so much more work to do about chronicity and patient data registries! I hope that others will take on this subject and continue to investigate it. I don’t think that I’d change much about the article as it stands besides diving deeper into the analysis if the page count allowed. If I could expand this project, I would attempt to interview the authors of the journal articles to learn about their perspectives on the attribution practices and the norms in their fields. Interviews present opportunities to ask open-ended questions and learn things that you generally can’t find on the internet. Liz Angeli, Lilly Campbell, T. Kenny Fountain, Jennifer Lemesurier, Cecilia Shelton, and many others have documented how embodied practices shape rhetorical work, and qualitative research methods like interviewing might reveal some of the implicit assumptions around research and attribution in specific subfields. Focus groups would also be interesting, particularly if I were able to get authors from a few different articles (and different fields) to have a conversation about these issues. In other words, the practice of research informs the ways we frame and contextualize the research both informally in conversation with others and concretely in peer-reviewed journal articles. In any case, I may continue this line of work in the future, and I hope that others take it up as well.