By Celine Hos
A bedtime story to tell there are no monsters hiding under your bed, an allegory about norms and morals, or a chat with your colleagues at the coffee machine on Monday morning about what you did last weekend — they all say something. They all give information.
I’d like to introduce you to a form of narrative research, also in use by biomedical scientists, which I discovered during my internship. It uses stories to uncover new insights and hypotheses: participatory narrative inquiry (PNI).
‘Biomedical science research that uses stories?’ I’d never heard of it before. In my mind biomedical research was always linked to lab research or randomized controlled trials with structured protocols and fixed parameters. But stories? They didn’t seem to include any of that. As it turns out, it is precisely for that reason that stories may be an enrichment to scientific research. In fact, it already has been of benefit for some years. Narrative research has been used in many different research fields, such as sociology, communication, and education studies .
By including patients in research like this — as the experts on their own disease experience — we can broaden our view and spread the fun of doing research to the public.
I came to find out that narrative research could also have its place in biomedical sciences. In the case of participatory narrative inquiry, known as PNI, the lack of fixed parameters allows the participants to share what they find important rather than what the researchers find important. So instead of a set of closed-ended questions that will only give a fixed set of answers, PNI uses open-ended questions. In this way, the researcher can get a new and perhaps unexpected perspective on the research topic.
In the life sciences, PNI has been used in a research project called Gut Feelings . In this project, researchers investigated inflammatory bowel disease. People with this disease suffer from chronic intestinal inflammation . In this study, patients were asked to share their experiences about changes in lifestyle and whether that change improved their condition. By using PNI, the researchers found that patients had mostly experienced changes in the lifestyle factors ‘rest and psychological balance’ and diet. Other lifestyle factors that patients mentioned include: the feeling of control about their own well-being and the course of the disease, regular treatment by doctors, social support, and physical exercise .
PNI is a type of research that will not be able to deny a hypothesis. However, the results from Gut Feelings show that PNI can be useful in two ways. Firstly, it can be a way to prioritize some of your questions (i.e., ‘rest and psychological balance’ and diet). Secondly, PNI can be used to generate more questions (i.e., the other lifestyle factors) (see Figure 1).
The three main characters of PNI
PNI has three main characters: participation, narration, and inquiry.
The first component, participation, involves the participants who do not only participate by answering questions, but also participate in all other components of the research such as the design of questions. By including patients in the research like this, the patients contribute to the research that will ultimately benefit them. This empowers patients to have a hand in the research that concerns them instead of only being told what is best for them in the doctor’s office .
The second component is narration. Instead of using questionnaires, the participants tell stories about their experiences. The advantage of stories instead of questionnaires is that the results are not determined beforehand. In this manner, unexpected information might come up. In addition, when working with patients, telling their stories has been suggested to be of therapeutic value .
However, the use of stories does not exclude the use of questions – the last component: inquiry. Questions are needed to incite a person to tell their story. Important here is to not ask closed yes-or-no questions but open-ended questions such as ‘what did you experience?’. For instance, in the project Gut Feelings the open question asked was: ‘Do you remember a time when you changed something in your life that made you feel better, what happened?’
The six acts of PNI
PNI can be performed in cycles of six steps as seen in Figure 2. The first step in the PNI cycle is the design of questions. Usually, these questions are prompted by stories you have heard about your specific topic. Consequently, the stories and additional meta-data are collected and analyzed for possible patterns. Next, the stories and observed patterns are discussed in a sense-making session. During the Gut Feelings sense-making session, doctors, researchers, and patients were brought together to talk about the results. This exchange of different views is essential to gain new insights.
Finally, the insights are returned to the community so that something can be done with it. For instance, it may lead to new questions. This was the case in the Gut Feelings project. It had turned out that quite a large portion of the stories included a change in diet to feel better. This incited this question: what specific change in diet did people with Crohn’s disease or ulcerative colitis make to feel better or worse? A new PNI project The Dietary Inquiry was set up to find out the answer.
The beauty of using a type of research using stories, is that you can come up with new questions when you have too few research questions or, select the research questions that are important to the people you are doing your research for. By including patients in research like this — as the experts on their own disease experience — we can broaden our view and spread the fun of doing research to the public. For biomedical sciences, PNI puts the patients or the ones who stand to benefit the most from the research at the center. So, in the future, maybe when you are doing your own research, and you’re stuck, go back to the beginning. Go back to the patient. What stories are they telling?
About the writer
Celine is a third-year biomedical sciences master student at the VU. She worked on the Dietary Inquiry project combining her interest in nutrition and the biomedical sciences. As she loves to tell people about science and nature, she is currently studying to be a biology teacher.
PNI is designed by Cynthia F. Kurtz, who has also written a book about it, called Working with stories. This book can be downloaded on her website here. Furthermore, Cynthia and her husband designed a freely available program called NarraFirmaTM, which is specifically tailored to design and perform PNI projects. I highly recommend using NarraFirmaTM when taking on a PNI project. It will guide you along the different stages in the process and may be used as a tool both to design the questionnaires and to analyze the gathered data.
 Salkind, N. J. (2002). Narrative research. Handbook of research design and social measurement, 143-196.
 Cynthia F. Kurtz. (n.d.). PNI project stories – NarraFirma. Retrieved February 26, 2021, from https://narrafirma.com/home/project-stories/
 Hidden Health Solutions (2021). Patronen in de verhalen van project Onderbuikgevoel. Over het project. Retrieved from https://www.hiddenhealthsolutions.com/welkom-bij-project-onderbuikgevoel/patronen-in-de-verhalen-van-project-onderbuikgevoel/
 Andersson, N. (2018). Participatory research—A modernizing science for primary health care. Journal of general and family medicine, 19(5), 154-159. DOI: https://doi.org/10.1002/jgf2.187
 Morris, D. B. (2008). Narrative medicines: challenge and resistance. The Permanente Journal, 12(1), 88.DOI: 10.7812/tpp/07-088
Image credits: cover photo by Pixabay, credit: Thorsten Frenzel; Figure 1 was custom-made using bioRender