Encounter between stories and evidence for a health care system to be transformed. Maria Giulia Marini

1. Encounter between
stories and evidence for
a health care system to
be transformed
Maria Giulia Marini

2. Synthesis
The narrative medicine
The tools to study care pathways
The tools of narrative medicine
Three case studies
Conclusions for progress

3. Working out the difference between science and the
humanities is long been a fashion and is now boring.
The method of solving problems, the method of
conjectures and refutations is practiced by both.
It’s practiced in the restoration of a damaged text as in the
construction of a theory of radioactivity.
Karl Popper

4. A first definition of narrative medicine
In 1999, T. Greenhalgh and B. Hurtwitz of King's College, published
an article on the definition of narrative based medicine.
With this definition it is described what happens between the
health professional and the patient from the collection of
information about events before the disease, how the disease
has occurred, with attention to psychological, social and
ontological.
Columbia University has coined a training program whose title
eliminates any rhetoric "on the possible alternative approach to
the narrative in health care": the science of narrative medicine.
Undo edits

5. “Narrative Medicine fortifies clinical practice
with the narrative competence to recognize,
absorb, metabolize, interpret, and be moved
by the stories of illness:… helps doctors,
nurses, social workers, and therapists to
improve the effectiveness of care by
developing the capacity for attention,
reflection, representation, and affiliation with
patients and colleagues.”
colleagues
Rita Charon
University of Columbia

6. But beyond the value of "empathetic" listeniong
of the individual patient, narrative medicine can
have an organizational value?
Can it help to redesign the social and clinical care path
passing by a singular vision (the case) in the plural
(occurrences in populations?)
Can it help produce quality in health and social care?
Can it help to fight waste of not appropriateness?

7. The main management tools to study the
pathways of care for patients
• Structured or semi-structured questionnaires (usually
with a low redemption today, though with great
expenditure of energy due to an overcrowding of
surveys).
• The flow chart (care maps) - designed by which roles?
Doctors, engineers streamline those expressed by
health professionals? And 'provided the voice of
patients?
• The medical records, which focus on the clinical
history with a legal and administrative and databases

8. Which tools in narrative medicine?
• The observation, listening and transcribing the
stories of patients by health professionals
• Shared and consensual reading of the diaries of
patients and professionals
• The parallel chart (a place where there are all the
other information / moods / thoughts which are not
provided in a medical record - grandmother ... a
disabled person who can no longer play with her
grandchildren and cooking, a dying girl who aims to
get to graduate ...)

9. 3 concrete cases of implementation of
narrative medicine
• The Odysseys of people with spinal cord
injury
Narrated Obesity in Italy: towards a cure
The Unveiling of the inability to
communicate the communication of the
diagnosis in patients with ALS

10. The Odysseys of people with spinal cord injury from trauma:
in search of bed in the Spinal Unit
The guidelines are clear:
Involve three stages: 118 -
Trauma Center-Spinal Unit
How many more steps in
search
the bed right?
Testimonies in 45 free
North Central and South
which
starting point was ...
before the accident I was ...

11. The cost of inappropriate admissions
collected through the narratives of a sample
population
In the study of Fondazione ISTUD and INAIL 2010-2011, on
a sample of stories heard and transcribed, in 53% of cases
of traumatic spinal cord injury there was at least one
hospitalization in inappropriate facilities (two in 30% of
admissions), for a minimum average of three weeks of
hospitalization, for an average daily cost of 850 Euros in
hospital. Data are Valid for North, Central and Southern
Italy.
If we multiply this rate of inappropriateness to the number of
new cases of people with spinal cord injury in Italy, we get a
figure of 9,564,922 Euros spent in centers not dedicated to
the care expert: it is a waste.

12. To improve the quality of care of spinal
cord injury ...
The spinal unit, as recent ones, are so re-known
scenario of care pathways
It should be done a campaign in activation of spinal
positioning of the units as centers dedicated to the care
that extends beyond the "circle of experts" to reach the
other medical specialties
To increase the number of beds in the spinal cord in the
Centre South

13. Research O.N.I.C.E: Obesità Narrata
in Italia: verso una Cura Efficace
Obese people (149 stories of obese, lose weight or
not) to tell, through the writing of a story semi-
structured (from once upon a time a boy/ a girl ... to
this day), how they heard and how they lived during
the different stages of obesity, related to different
periods of his life and the journey of care.
Next to them, the experiential narratives of 25 health
professionals who take care of obese people daily
encountered in their professional care.

14. Some of the results…
100 stories were expected of severely
obese or severely obese former in two
months (March-May 2011) collected
through the website of Obese Friends: 149
stories have arrived, all analyzed, 92%
women, mean age 38 years.
Great curiosity and interest by the 25
health professionals to dedicate their time
in interviews to understand why they chose
to treat obese people and what could have
been put in place to combat this condition.

15. “The unbearable weightness of being “
The stories of people who are obese are mainly
narratives in which the fundamental question that
emerges is to rediscover the ability to love ourselves in
a meaningful way: through the pathways of care, the
fight against an ancient sense of guilt and inadequacy
that led these people to precisely weight yourself
against the outside environment.
The lives of these people are "solid" as their bodies:
solid relationships or marriage living together, usually a
permanent job won, firm partners with them :
apparently it seems that everything is fine ...
But one day, in one hundred forty-nine stories in our
collection, comes the upsetting of the balance

16. break-
The break-point in the “unbearable lightness of
being”
It is fostered by an actor which is often forgotten and neglected:
the body that speaks with its signals in shortness of breath,
heaviness in the lift off the ground, not being able to cross your
legs, palpitations and shortness of breath to hear, in the joints of
the legs and increasingly sore feet.
And 'the body, when the weight has become "untenable"
screams his illness.
And finally the moment of true awakening of the obese person:
there is no incentive to be long-lasting aesthetic, but it is
necessary, feels a pain to decide who is seriously time for a
change "lifestyle". And this is not a story, a case report, but a
typical occurrence in the stories of these people. An event that
continues to repeat itself.

17. Between stories and digits
Over the years countless diets began including
twice with the support of anorectic drugs ....
Also visited an infinite number of varied diet
experts: doctors, nutritionists, acupuncturists,
beauty therapists, self-proclaimed experts ...
Over the years, started countless diets including
the Atkins diet points, diet quan ...
Also visited a number of experts varied diets:
nutritionists, homeopaths, physicians,
endocrinologists, gynecologists, psychologists…

18. Between stories and numbers
There are 65 stories of people who visit more
than 10 experts to get up to a "priceless":
44% of the protagonists. The treatment
began at the age of adolescence and
forward until now.
Supervising the project ONICE: King's
College, Center for Humanities in Health;
London and Centro Eric Berne, Milan

19. Conclusions of ONICE research
Professionals agree that there is no a real education about a
healthy lifestyle, addressed to families, schools, media ...
removing the prejudice that it is only a cosmetic problem, but
that is a matter of health.
They have a full perception of the disease in its complexity
(physical, social and psychological), which impacts not only on
the quality of life, but also, powerfully, its quantity in terms of life
expectancy.
Emerges a clear need for a team of a skilled and aware team in
multidisciplinary care, skilled and aware, in order to achieve
lasting results,

20. The travel for confirmation of the diagnosis for
people with Amyotrophic Lateral Sclerosis
The starting point of the story to people with ALS has
been ...
"When did you notice that something was wrong
?...."
From this origin stories of the people interviewed
full of and written records of visits, diagnostic
tests, second visits, surveys ... until other people
have told us how they were given notice of the
confirmation of diagnosis ...

21. Could be better this critical moment in
co0mmunicating?
“The communication was sent to me by mail from the doctor who had made ​the
diagnosis. Absolutely not during the visit gave me great directions. It was very far from
us to imagine that it was a disease like this. “
"I was told not to do long-term programs.“
"In the room I was told directly by using the word motor neuron. Not even 20 minutes
later he was admitted to a person next to me who had motor neurone disease and
could not move anymore.
"My wife was informed that he had motor neurone disease. I ask for a meeting with
the doctor to find out what it was and he informed me that ALS is a worst thing. I
asked how I should behave in practice what I had done came home and handed me a
newspaper saying to document. The third time I ask for further explanation he tells me
that medicine can do nothing, it remains only to go to Lourdes. "
"When I said I have motor neuron disease suspicious because I was told not to go
home and see what it is.“

22. For an analysis of narrative and the unveiling of
a problem will have to follow an intervention to
improve
• The doctors had no perception of the problem
emerged with the patients, but felt that the
communication was sufficiently good
• For physicians and teams who have the task of
giving the news of ALS patients is preparing a
checklist of good practice and a video
communication with a practice to be used in
everyday communication.

23. Conclusions to progress
• Narration between linearity and
circularity
• Among real and virtual spaces
• Narrations and sustainability

24. The narratives in health
care are not linear but
twisted, tangled. Are
Sense and Sensibility with
unrolled for them to
understand, measure and
then use.
On the other hand, the calculus through the
tangents (derivatives) is able to accurately
measure the areas of non-linear paths.

25. Among real and virtual spaces
The cost containment measures will ensure that in
future we will move from a primary interaction between
health professional and patient movement in real space
to virtual space.
Web 2.0 - social networks - and the communities of
physicians online, online professional and patient
organizations are spreading inexorably. Sometimes
they are more humanized technology than some real
health care settings.
Patients online gladly leave their stories, material to be
studied, developed, and returned to the scientific
community, decision-makers, patients and citizens
themselves to transform health care.

26. Narrative medicine yields to sustainability
Through listening to the clean, conditioned by early
assumptions, the reflection on the said / unsaid, the written /
unwritten, driving research to understand the flow of the
course of treatment with a subjective camera - the views of
patient - you can fathom how they are erratic paths, and
quantify waste in order to transform the way.
Every wrong step is an anomaly of an unsustainable waste
quality and health. Each relationship discontinued because
of lack of humanity and responsibility between therapist and
patient is an anomaly in the quality and unsustainable waste.

27. The so-called scientific knowledge is not
knowledge, since it consists solely of
conjecture and hypothesis - even if some
assumptions that have crossed the crossfire
of ingenious controls.
But we do not know.
We try only a guess.
Karl Popper