Presentation at the International Health Symposium on PATIENT EMPOWERMENT, ICT AND HEALTH COMMUNICATION: DIGITAL PRACTICES, CURRENT ISSUES AND FUTURE TRENDS, University of Sassari, 27th May 2014

1. © P. Lalli
Trust, inequalities
and health literacy:
the tangle meeting
with Dr Google
International Communication
Health Symposium
Sassari, 27th May 2014
Pina Lalli
University of Bologna

2. © P. Lalli
Highlander the obscure
object of desire
(technological)
The leader is… a Manager
of Apple and La Roche
PC World Italia 20-9-2013

3. © P. Lalli
Twitter is becoming an important tool in medicine, but
communities rarely overlap and share (Mishori et al 2014)

4. © P. Lalli
90% of physicians use
the Internet, 1 in 3 has
a tablet
81% use the Internet
for medical updating
(Eurisko 2013)
The Italian digital
informed MD
All the 68 medical specialists interviewed for a
research in a northern Italian town (2014) affirm that
their patients talked about medical information found
on the Internet

5. © P. Lalli
On line services offered to MD and
patients by the Pharma MSD Italia
More than 130.000 MD logged on
Univadis and Docvadis
7 out of 10 hospital
specialists in internal
medicine consult the
Internet during their
examinations (FADOI
2013) (only 8% by
institutional PC)

6. © P. Lalli
FADOI (federation of the internal
medical specialists associations) offers
on AppStore the application
Fadoi Guides
You can find a ranking
for App with special blue
labels to diagnosis

7. © P. Lalli
Nurses for health and people: advices and handbooks

8. © P. Lalli
Internet usage in Italy
Audiweb December 2012
Internet users in Italy
More than 38 millions (63%)
(75% in those aged 11-74)
Eurisko in 2012:
1 out of 2 looked for health
information
11 millions just looked for it
4 millions shared peer
information
Young people: aged
11-34 years 92%
Universities (teachers/students):
100%

9. © P. Lalli
June 2012
FB
Google+
Twitter

10. © P. Lalli
Inequalities (people aged 11-74 connected from home - 2012)
Internet
usage
increases
with
the
level
of
education
(from 93% to 43%)
Usage
increases
among
the
people
who
work
(84%)
Usage increases among the youth (from 91% to 53%)
Usage increases among the white collars (from 94% to 74%)

11. © P. Lalli
Dr. Google
Source: Pew Research Center’s Internet 2013
In Usa

12. © P. Lalli
Dr. Social
Source: Pew Research Center’s Internet 2013
In Usa

13. © P. Lalli
E-patients and MD on Twitter
Communities on
several diseases
è Engagement shared by
patients, families,
physicians, services
providers
Constellations and interaction orbits
We need further
research and debate
on the metrics and the
actual influence
process
May be they don’t overlap

14. © P. Lalli
However
interpersonal “traditional” influence still exist
Got information from a professional: 70% (8% also on line)
Talked with family or friends:
60% (20% also on line)
Talked with similar patients:
24% (7% also on line)
Challenging an actual health problem:
Source: Pew Research Centers’Internet (2013)
Yet the data suggests that one-third of
U.S. adults are “on line diagnosers”
(only a part of them also sees a doctor)

15. © P. Lalli
“Networked individualism”?
“This new world is oriented around looser, more fragmented networks
that provide on-demand succor”
It creates new affordances but requires new social skills
Pew Center’s and University of Toronto Net Lab hypothesis (2012)
People “need to develop new strategies for
handling challenges as they arise. They must
devote more time and energy to practicing the art
of networking than their ancestors did in order to
get their needs met. They can no longer passively
let the village take care of them and protect them.
They must actively network to leverage the human
resources”.

16. © P. Lalli
Off line social groups: they exist
They provide a context of experience more or less helpful
They influence the cultural elaboration of information
They limit or enhance the social capital
opportunities
They influence power distribution
They contribute to identify the opinion
leaders (and the “influencers”)
They forge relationships and provide more or
less access to the services

17. © P. Lalli
Just an example: the immigrants (Emilia-Romagna)
Immigrants (2011) Average age : 44,7 years
% migrants at January 2013 (underrated): 13 %
2011
Age: all the
residents
Age: the
immigrants

18. © P. Lalli
Immigrants women are more likely to have an abortion than
Italian women (2003-2009)
Immigrant women originally from Africa show the highest rate of
abortion (24% vs. 7% Italian women)
Health complex inequalities
For 18.5% of hospitalized immigrant men this is due to an
injury
Source: Osservasalute (2012)

19. © P. Lalli
Complex inequalities
In 2005 the Hurricane Katrina
destroyed the wooden huts and
spare the chic neighborhoods
(Dovril 2007)
Index Food 2013 Oxham:
Sub-saharian African
countries show the lowest
rate
Usa 1971-1991: 25-64 years
old black men have higher
death rate than same aged
white men; college graduate or
more (same age) die less than
lower educated people (doj:
10.1371/journal.pone.0002181.g001)

20. © P. Lalli
Which skills – which challenges
in a networked world?
Engagement
Competition (conflict of interests)
Negotiation
Understanding differences
Facilitating access
Shared knowledge
New opportunities for health (digital) literacy?
New forms of information governance

21. © P. Lalli
In a large sense « health literacy » is
skills and abilities to find,
understand, evaluate and use
health related information and
concepts
è To make informed choices
è To reduce the risks
è To improve the quality of life
(Zarcadoolas 2005)

22. © P. Lalli
Individual or collectives skills?
reading skills
previous knowledge
education
skills in the comprehension of
written, oral or otherwise supported
information
-----------
while ”other factors“ such as the
cultural norms, or some generic
“barriers” to the change remain in a
secondary background
Usually we list individual factors such as:

23. © P. Lalli
Individual or collective factors?
Different models offer explication
tools and measurement tests for
the individual levels of literacy
Yet… something sounds wrong
Social Media “mean embracing
the idea that the world is
composed of social networks,
not individuals” (Lefebvre 2013)

24. © P. Lalli
The challenges
The
dominance
of
“a
neoliberalist
discourse”
tends
to
stress
individual
responsibility
and
lifestyles,
despite
“the
immense
complexities
involved
in
dealing
with
the
social
nature
of
health”
(Krumeich
&
Meershoek
2014)
So it results in the preference for those
approaches that are focused on
individual learning and teaching in order
to “empower” by the “right” information

25. © P. Lalli
The traditional model
Autonomous information would be
wrong, the Internet sources can be
wrong and too many, people would
lose the trust in the legitimate
medical knowledge
è The citizen looks like a bowl where
too much water is flowing, and too
fast
è The doctor is alone and helpless
dealing with too many competitors

26. © P. Lalli
The implicit assumption
Implicit idea that the doctor
has the only right model of
health and illness, then we
must disseminate it

27. © P. Lalli
The tacit assumption
So, we would only have to clear the
misconceptions and fill with the
correct ones
è The ideal patient as tabula rasa
è The doctor straight and narrow
Adherence to the informed
prescription would be the ideal
outcome of literacy

28. © P. Lalli
The challenges
What we forget?
The framework of the trustly strenght of the
tangible experiences
(mixed with many subtle marketing influences)
The “stormy” power relations among
different interest groups
The strength of divergent
perspectives
The basic influence of the socio-
cultural disparities and
memberships

29. © P. Lalli
Just some examples
In France: a study shows a trend among the doctors to
underestimate the symptoms of lower educated patients
Usa: the individual scores in health literacy may be influenced
by the perspective used in the measurements tools
Italian comédie de l‘art, you can choose: the Stamina affair,
the Di Bella affair, the Internet debate on inoculation, the
divergent findings about the risks connected to the e-
cigarette….
More in general: new social representations of the
body, of good and healthy food, of healthy and fitness
lifestyles, therefore new potential forms of stigma for
illness…

30. © P. Lalli
Health Literacy just as a “Giving information” Model?
Before
After
WE THEM
(Source: rielab. from Les Robinson, Social Change Media)

31. © P. Lalli
Alternatively
Before and after
Relationship
Listening
Reciprocity
Framing context
Mutual trust in
mutual “literacy”
as inter-active
understanding

32. © P. Lalli
Stop climbing the pyramids!
(Dixon&Reyes 2013)
Let’s not even get into the vortex of the innovations:
we can learn to appreciate their challenging new forms of
relationship, constraints and trust

33. © P. Lalli
We might study… and exploit
The mutual practical literacy that every
day doctors, patients, families may
challenge on line and off line; they can
fail because of the prejudices, the often
implicit bias of different interests, the
budget cuts, the unequal distribution of
resources and power…!
Yet they have to deal with it - less as competitors in a master-
slave relationship, more as interactive partners
In the framework of a neoliberalism governamentality
(Foucault) we should consider who sells unequal technological
models of the perfect utopian health, avoiding an explicit
socioeconomic and hence political agenda

34. © P. Lalli
10 GRAZIE
pina.lalli@unibo.it
Thanks for your attention
«Tell the truth and
trust in the people»
(Joseph
N.
Pew
Jr.)