An important question is how to make scientific use of knowledge coming from patient experiences. On the ImmunoWeb Platform we do this by collecting and analyzing (also called ‘evaluating’) stories that experiental experts can donate on this platform. The information obtained is analysed by the scientific method of Participate Narrative Inquiry (PNI). Its results are shared with the ImmunoWeb Platform on a regular basis and are also used as input for further scientific research.
What is Participatory Narrative Inquiry (PNI)
PNI is derived from a method that is commonly used in social sciences, ‘narrative inquiry’. The method is hardly used in medical science. From januari untill july 2016 research will be conducted at the University of Amsterdam on how PNI is applied within Immunowell immunological research. In practice PNI is a method that enables new, unforseen insights to emerge from stories concerning experiences that people have (had) with a certain subject. In this regard PNI is not the same as for instance sending a patient questionnaire. With questionnaires there is always a certain bias because the questions only reflect the subjects that the maker of the questionnaire could think of. In the case of PNI the questions are merely meant to provoke a large group of people to tell their story. This leads to much richer and often unexpected information.
Steps in PNI
First a group consisting of people and perspectives that are relevant to the subject (in this case patients, scientists and medical specialists), determines which kind of stories are needed, which story-provoking questions have to be asked and which aspects of the stories need to be analysed afterwards. Immunowell is in contact with an organisation that has the software to collect and analyse the stories. The story-provoking questions wil then be published on ImmunoWeb after which everyone can donate his or her story. In several rounds new kinds of stories can be collected again and again over time. Results of the analysis of the collected stories will be shared with the Immunowell Platform on a regular basis.
Advantages of PNI
PNI can also contribute to a better understanding of your personal situation, for instance by evaluating a certain therapy. The complexity of your body and life is hard to capture in a lab, which is why PNI helps by stating open questions. This makes PNI particularly suitable for investigating the complex domain of the immune system and Chronic Immune Disorders. By sharing your experience in this way you can make a difference for others: other experiental experts, scientists or medical specialists.
Hidden Health Solutions
To implement this method further, the company Hidden Health Solutions is started in november 2017. Hidden Health Solutions leads and facilitates projects where the experiences of patients with a CID are collected and analyzed. These projects are carried out for organisations whose customers are patients. Part of the revenues from these commercial activities can then be invested in the development of ImmunoWeb.