The method we use is called Participatory Narrative Inquiry (PNI). It’s a method where qualitative and (semi-)quantitative data about people’s daily experiences are collected and studied in a structured way. The qualitative data are collected in the form of stories. The method has many areas of application, but Hidden Health Solutions applies it to the experiences of people with a (chronic) illness to gain more insight in what improves their quality of life.
How we apply the PNI method (see figure)
1. Design questions. This is a cocreative phase where patients, researchers, medical practicioners and/or health organisations work together to determine story-provoking questions for a specific project. After that they determine meta-questions about the stories and questions about the people that share the stories. Because of the sensitive nature of patient stories, Hidden Health Solutions will often ask people to share anonymously. Personal questions are often limited to age, gender and diagnosed condition.
2. Collection of stories and meta-data. We collect the stories and meta-data online via a questionnaire form. This looks like an upside-down standard questionnaire, where the last open ‘other remarks’-field is now the first to appear.
3. Meta-analysis. The software we use analyzes the collected meta-data to extract trends, similarities and exceptions.
4. Sense-making. This is also a cocreative phase where patients work together with scientists, medical practitioners and/or health organisations to make sense of the stories and the meta-analysis. This is the key phase of the method where new insights emerge.
5. Insights, hypothesis, interventions. In this phase actual insights, hypothesis or even interventions are formulated. This can be input for a next PNI cycle where new stories are collected.
6. Return insights. An important step in our way of applying the PNI method is the return of insights to the patients who shared their stories. This will be done online, via mailings and/or meetings.
How does PNI relate to RCT?
The method often used in medical science is the Randomized Clinical Trial (RCT). This method aims to experiment under controlled circumstances and uses a double blind procedure, all to exclude as much context as is needed to prove if an intervention or medicine works or not.
The exposome by definition however is a complex field of inter-related influences that can reinforce or diminish each other. Those influences therefore have to be studied as being connected and as part of their context. Therefore the RCT method is only applicable in this field, after having explored several influences of the exposome and after identifying the most relevant influences. The latter can be done by using the PNI method.
The PNI method bridges the gap between theory, developed by classical medical research in RCT’s, and patient practice: the influences of the exposome on health in their full context.