La Salud Divide
Cómo se puede interrumpir el círculo
vicioso causado por la desigualdad
en lo concerniente a la salud en el
Reino Unido
Jennie Popay
Lancaster University
[email protected]
Presentación
• Medidas claves en la estrategia para reducir
la desigualdad en el tema de la salud.
• El papel que desempeña el conocimiento de
la persona no experta y el compromiso de la
comunidad.
• Las limitaciones para una acción efectiva por
parte de la persona no experta y de la
comunidad.
The Apology!
Antes de empezar me gustaría
disculparme por no dar la charla en
español, pero como muchos otros
ingleses no hablo otra lengua, menos
Swahili y ese idioma no me serviría
hoy. Espero que puedan entender los
principales puntos de esta charla.
Five key steps in a
strategy to reduce inequalities
1. Develop political consensus
2. Build public awareness
3. Consolidate & disseminate evidence base
4. Incorporate lay knowledge in evidence
base
5. Engage communities in action
Step 1: Develop political consensus:
Is the problem a ‘divide’?
– Residual: the poorest groups
are the problem
or
– Gap: the difference between
the poorest groups and the
rest of us is the problem
or
– Gradient: inequalities right
across the social spectrum
are the problem
If we don’t get this right then we
won’t get the action right
either!
Step 2: Build societal awareness:
Whose problem is it?
– Victim blaming: Nothing to
do with us?
– Paternalist: give them a
helping hand
– It affects us all: we all have
a little less ‘health’ & well
being than those more
advantaged than we are.
– ‘Wilkinson hypothesis’:
Inequality rots the fabric of
societies
If we don’t get this right we
won’t get political
commitment
Step 3. Develop the evidence base:
•
More primary evaluative
research & reviews of
evidence of ‘what works’
•
Need developments in
methods for evaluating
complex interventions &
synthesising diverse
evidence
•
Evidence needs to be made
user friendly: more attention
to presentation and
dissemination
•
More imagination about what
counts as evidence
Step 4. Incorporate Lay
knowledge into the evidence base:
•What is lay knowledge?
•Why is it missing from the
evidence base at present?
•How can it contribute to
evidence and action on
health inequalities?
What is lay knowledge?
• Accounts we all construct
to understand, explain
and assign meaning to
events in everyday life
• Knowledge in the form of
stories – narratives
• Subjective (viz objectivity
claimed for professional
knowledge)
Lay and ‘expert’ knowledge
• Science seeks to answer questions about
causality:
– How is a particular phenomena explained?
• Lay knowledge seeks to answer questions
about ‘meanings’:
– Why me? Why now?
Why is it missing from the evidence
base?
– Low status – considered to be untrustworthy
– Viewed as primitive remains of earlier
unscientific less rationale age
– Studied as curious beliefs that may help us
understand ‘risky’ behaviours
– But growing recognition of sophistication of
lay knowledge
How can lay knowledge inform
action to reduce health
inequalities?
1. Quality of care
2. Individual behaviour
3. Wider determinants of health inequalities
1. Quality of care:
•
Individual patients • ‘Risky’ behaviours
– Re-thinking noncompliance e.g.
Medication as a
resource
•
2 Understand behaviours
Collective voices
– Transformation of
mental health
services
– Community
controlled &
delivered services
– not primarily a question
of lack of knowledge
• Understand ‘meaning’ of
behaviour in context of
everyday life
– e.g. Smoking as a coping
mechanism amongst
white mothers living in
poverty
3. Address wider determinants of health inequalities
An example:
The nature and significance of lay
theories about the causes of health
inequalities.
Qualitative research into people
accounts of the lived experience of
inequalities in the north west of
England
References:
1. Popay, J, Thomas, C. Williams, G. Bennett, S. Gatrell A. & Bostock, L. (2003) A proper place to
live: health inequalities, agency and the normative dimensions of space, Social Science &
Medicine, Volume 57, Issue 1, Pp 55-69
2. Popay, J Bennett, S. Thomas, C. Williams, G. Gatrell, A. Bostock, L. (2003) Beyond ‘Beer, Fags
Egg and Chips? Exploring Lay understandings of social inequalities in health. Sociology of
Health and Illness. 25(1)1 – 23
What were their theories about
health inequalities?
First they emphasised indirect
mechanisms linking poor material
circumstances and ill health.
– ‘Stress’
– ‘Social comparisons’ a source of stress
It’s only obvious that we would not feel
health wise as someone would who has all
the comforts and luxuries around them.
You know they go on holidays three times
a year..whereas we can’t afford to go on
one holiday so that’s the difference. Their
outlook on life is more relaxed and at ease
and comfortable. Whereas we are
struggling day to day with pressures and
to keep up with things.
Second they emphasised ‘strength of
character’ as the most important protective
factor
The first thing you do when you get up is see
the graffiti, the vandalism and it doesn’t help.
But at the end of the day if you let it get to you
it just causes you ill health. I mean I just lock
the door and forget about it. It’s how the
individual deals with it all. If you let it get you
down, you are going to have the health
problems
Third they understood the role of
wider social determinants
I mean everybody has a bit of worry. But it’s
our own worry brought on by ourselves.. .but
outside worries that you haven’t got any
influence on changing that has a bigger effect
on you I think. You can’t sit down and think
‘well I’ve got this problem and how can I solve
it’. Cos you can’t solve it if it’s outside your
house… It’s an outside influence that you
can’t control, you can’t change it, you haven’t
the power to change it and it takes over your
life….
Lay theories serve important purposes
‘Assign meaning’ to experience of inequalities by:
ƒ ‘Reconstructing’ moral worth: Individual & collective
ƒ Re-asserting individual control emphasis on indirect
mechanisms which ‘strength of character’ can control
ƒ Reconcile need for control with wider determinants – no
lack of knowledge about structural constraints
In response policy
and practice should..
• Recognise the moral nature of health
inequalities
• Seek ways to avoid increasing the
stigma of inequality
• Give people real control over the
design, delivery and evaluation of
interventions – engage them in action
Step 5: Engage Lay Communities in
action to reduce health inequalities
The 21st Century silver bullet?
CE has a long history in UK
A priority for policy and practice
to address health inequalities
BUT
It can mean just about
whatever agencies want
it to….
Different definitions – different purposes
•
‘empowering citizens to express views on how needs are met’.
•
‘working with local people to strengthen accountability’
•
‘bringing local people into the service delivery system’
•
‘putting active citizens at the heart of tackling social problems’
•
‘Building people’s skills, knowledge, abilities and confidence to take
action and play leading roles in improving services
Differing perspectives
on the current situation
• It’s good:
– Opening up space for social transformation
• It’s bad:
– legitimising reduced role for public services and
increased privatisation of social welfare
• It’s ugly:
– ‘spaces are permeated with relations of power’ - a
struggle going on leading to casualties
But no sign of major changes
as a result of community
engagement in policy
‹Most
developments ‘at the
margins’ not changing the
mainstream policy/practice
‹Agencies
not delivering to
expectations – breaking the
psychological contract
‹People
(lay and professional)
are getting damaged
‹
WHY IS THIS HAPPENING?
BARRIERS CONSTRAINING CAPACITY FOR
PARTNERSHIP WORKING WITH LAY PEOPLE
LAY
CAPACITY
TO ENGAGE
Lack of
understanding
how the system
works
History of lack of
responsiveness of
of organisations
Lack of
support to develop
lay people’s
competencies
Local
Lack of
innovation
History of
lack of ‘equality’
in partnerships
Lack of
understanding of
local history & culture
ORGANISATIONAL
SKILLS & COMPETENCIES
Audit/
financial
requirements
Professional
culture of power
and control
Non- participatory
culture/structure
Over simplistic
approaches to
lay people
Lack of skills
in engaging
with lay
people
political
dynamics
Resistance to giving lay
people influence
Risk
aversion
Lay people only
‘allowed’ to define
problems
SYSTEM
DYNAMICS
Crowded
agenda/overload
THE MAIN
PROBLEM
Anger/Frustration
amongst lay people
National
policy
imperatives
Lack of
respect and trust
for lay
knowledge
Lack of belief in lay
people’s capacity to
act
History of poor
multi-agency
working
Little recognition
of benefits of
working with
lay people
Professional
education &
training
Different
models of
health
Transactional not
transformational
leadership
PROFESSIONAL
SERVICE
CULTURE
ORGANISATIONAL
ETHOS & CULTURE
A MESSY MODEL!
BUT REAL LIFE IS MESSY!
Highlights barriers to community engagement
1.
In public sector
2.
In communities
Public sector barriers arise from:
• Lack of appropriate skills and competencies
• Professional and organisational cultures
• Wider system dynamics - the quick win!
• Lack of clarity of purpose – is CE just a delivery
mechanism or something more?
In communities research suggests:
• There are barriers
BUT
• Not lack of capacity or knowledge
The story of ‘Cod’s Head Soup
Recognising lay expertise in disadvantaged communities
So what are the barriers to
lay people engaging in action?
• People say they will act collectively if they
believed that:
– there were important and relevant issues
– and collective action would be effective
• Research demonstrates there are many relevant
and important concerns
• But still few people get engaged to change things
Lay people seem to be acting
on evidence!
• The ‘engagers’ – engagement transformed their
lives.
• The ‘disillusioned’ - engagement had had
significant negative impact on their lives
• The ‘reluctant’ – never engaged, no evidence it
changed things and so don’t see why they should.
A CENTRAL PARADOX
For any strategy to reduce
health inequalities
• Widespread, genuine commitment to engage with
communities in the public sector
• Widespread capacity for engagement in ‘disadvantaged
communities’ but people learn from experience that it
won’t be effective
• Profound cultural and structural changes are required to
release community and organisational capacity for more
effective engagement and joint action.
So what is to be done?
• Taking lay knowledge seriously not a silver bullet
• Engagement can damage people if not done well.
• The challenge is to release capacity not build it
• Recognise and reduce barriers to capacity release
in organisations, professions and lay communities
• Power must be redistributed and action must have
impact
But most important – recognise the
profound nature of the challenge:
•
Community engagement is not about
involving people in decisions about
‘how their money gets spent’
• It is about involving people in enduring
processes to allow them to have a real say in
‘how life is to be lived’
a struggle over ‘meaning’ not ‘resources’
Muchas gracias por su atención