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Integrating the observational studies with narrative

Through narrative, we re-organise a lived experience by connecting people, events and happenings, giving them sense and creating meaning.

The deep sense of narrative, the form and style in which we narrate ourselves represent that subjectivity that has always been mistrusted in scientific research, as it would not allow reaching an “objective” reality. If we also consider the intersubjectivity – i.e. the subjective role of those who listen to or analyse, in the case of the researcher, narrative – methodological perplexities seem to increase.

It is true. Different people tell different stories of the same event; probably, if we invite someone to present him/herself in different moments, his/her story would change every time. Nevertheless, doesn’t this also happen while administering surveys or questionnaires? How many people, even at a short distance of time, have completed a measurement scale giving every time different answers?

More than “hunting the ideal tool” allowing us to pursue the most objective representation of reality, in my opinion, we need to dwell on the unique methodological opportunity that narrative offers: that is, understanding what the perceptions of a person, his/her objectives are, what he/she thinks of a topic. By doing so, we move from considering when to focus on how and why

If managed with methodological rigour according to the indications contained in the Cultural Contexts of Health: The Use of Narrative Research in the Health Sector guidelines, these aspects can give a considerable knowledge contribution, widening and completing the often exclusively numerical results of the traditional quantitative tools.

Let us take an example: for the evaluation of visual function, ophthalmologists employ the validated tool Visual Function Questionnaire (VFQ-25), composed of 25 questions. Question number 5 reads: How much difficulty do you have in reading a typical print newspaper? The possible answers are: Absolutely none – A little – EnoughExtremeYou stopped doing it because of your eyesightYou stopped doing it for other reasons or because this activity does not interest you.

The answer allows us to understand how difficult reading a newspaper is. Considering narrative also allows us to understand what it means for the person to read or not to be able to read: what it represented in the past; what it represents now and what it could represent in the future; when and how the difficulties arise; if it has been able to compensate in some way for this problem. 

Non-interventional observational studies are designed to observe what is happening, in particular by focusing on the clinical effectiveness of treatment. However, in recent years, there has been an increasing awareness of the need to consider not only data on efficacy but also what patients feel, what their goals are concerning a treatment, what they want. People with the same wellbeing, diagnosis or illness may have very different perceptions of how they feel, what their ability to cope with the limitations of the disease is, what their goal of wellbeing is.

As ISTUD Healthcare Area we have introduced, together with Contract Research Organizations (CROs), the administration of narrative next to questionnaires and validated quality of life scales within three observational studies.

What better perspective than that of open listening, not with closed questions that lead to multiple answers or the dichotomous yes/no, but through opening stimuli (narrative prompts) allow the person to narrate their point of view without influencing the answers.

Narrative research is possible, with rigorous work and respect for the criteria of analysis, and the comparison of two or more researchers independently. This approach allows to obtain numerous qualitative data and, through the construction of patterns on recurrences in the narratives, also quantitative data to record an experience, an emotion, a need.

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Degree in Political Science, Master in Health Management at SDA Bocconi in Milan. He developed research project, training and consultancy in healthcare organizations. He is professor of organization and health politics. In recent years he focused his interest on sustainability and personalization of care through the narrative approach. He has authored various project research, articles and essays on these topics. He is Director of the Health Area of the ISTUD Foundation, member of the Board of the Italian Society of Narrative Medicine.

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