The project “Narratives of people facing pulmonary hypertension” was born from the opportunity of collaboration between Health Area of ISTUD Foundation and AIPI Association, and realized with the unconditioned grant of Bayer.
The aim was to give value to 131 narratives of people facing pulmonary hypertension, collected during years by AIPI: this, through analysis and interpretation, in order to comprehend patients’ emotional and relational life and to analyze care path, interactions with professionals and reference structures.
Pisana Ferrari is the president of AIPI (Italian Association of Pulmonary Hypertension), association born in 2001 by a group of patients affected by pulmonary arterial hypertension cured at Policlinico S. Orsola Hospital (Bologna, Italy).
P.F. AIPI aims to support patients and their familiars in several ways: giving information, psychological support, social security advice for legal disability, creating encounters and social activities. We have a trimestral review, “AIPI News”, that is both the association’s diary (chronicle, calendar of activities), a direct-line with members (through biographies, letters, drawings, poems, and novels) and a source of scientific update on pulmonary hypertension research. We did several publications, the last two: one on thromboembolic chronic pulmonary heart – one of the several forms of pulmonary hypertension – and one on lung transplant. We wrote a manual on pulmonary hypertension, with information about the disease, patients’ stories, and practical advices for everyday life; a “Guide to emotional aspects of the disease”; the publication “Practical advices for everyday life”, and a brochure about law. AIPI instituted a fund to cover travels for visits and other costs regarding the disease for patients in economic difficulties, to help them to face difficult situations. We are on social networks: for us are another occasion for encounters, exchange, and sharing between patients.Q. How do you consider the use of Narrative Medicine, regarding your experience?
P.F. I have always believed in Narrative Medicine, even before its definition. In 2003 we have already started collecting patients’ stories. In the meanwhile, the idea Narrative Medicine was arising. I got sick in 1988, when there were not drugs neither transplants, and I did not know any other patient in the region I was living that period. To know by others the living with disease is very important: for who reads, because he/she can better understand problems; for who writes, because writing has a therapeutic value, it helps to tidy the mind up, to see ourselves from outside, and to reconstruct a path. Writing has value for both, and even for physicians, who can understand things patients do not say. This can contribute to improve doctor-patient relationship. Narratives give useful information: a study such as the one by ISTUD Foundation gives concrete data, and these elements can be employed for therapeutic paths. There is a benefit also for the National Health System, to understand adherence to treatment in order to avoid wastes: going from a hospital to another has practical and economic consequences not only for patient, but also for NHS.
Q. Which impact can Narrative Medicine have in care management and in relationship between clinicians and associations?
P.F. During the meeting we had in December 2015 with ISTUD Foundation, one of the maximum world specialists in pulmonary hypertension has come: this is a success, and can have interesting evolutions. Until some years ago it was difficult to believe that a collection of stories, analyzed through elaboration tools, could give concrete data and improve doctor-patient relationship. This enthusiasm is great. Furthermore, the final report will be very important to spread at a scientific level. Together, we conducted a very significant study, giving useful and interesting information: now, we have to understand how to use it for a continuous improvement.
Q. As concerns your experience, do you recognize yourself in evidences emerged from the analysis of narratives?
P.F. Certainly, I look back on myself, my difficulties in finding information on the disease or other patients, my sense of isolation, my fear and uncertainties, my relief in finding the appropriate medical center, and so on.
Q. How can Narrative Medicine create sustainability in healthcare?
P.F. Narrative Medicine can improve clinical practice and doctor-patient relationship, with positive consequences on adherence to treatment and a better disease management by patients. This, in turn, can reduce wastes for useless visits and/or recoveries. Data emerging through Narrative Medicine allow to give value and to share healthcare best practices. It is a developing field, often not appreciated, but – according to me – has great therapeutic potentialities.