uk nsc stakeholder event 2017 dr louise bryant presentation
TRANSCRIPT
Public Health England leads the NHS Screening Programmes
Facilitating informed choices in
screening
Dr Louise Bryant, Associate
Professor in Medical Psychology,
University of Leeds
UK NSC four country definition: personalised
informed choice
2 Facilitating informed choices in screening
the condition being
screened for
the testing process
benefits and harms
potential outcomes
“A personal decision made to accept or decline a screening test based on
access to accurate, evidence-based information covering……..”
“There should also be the opportunity to reflect on what the test and its
results might mean to the individual”
Personalised informed choice: context
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Alternative views exist on the value of
screening tests
Ability to use health
information to make decisions
is limited
The screening environment
matters
“.. all the doctors not knowing
if it is malignant or not, you
add them all together and you
think, ‘Why bother?’1
4 Facilitating informed choices in screening
“Screening
mammograms
are next to
worthless”2
Alternative views on screening
“I just want [my doctor] to say,
‘You should go, you must go ...
this is where you go.’” 1
Unhappiness with ‘informed choice’
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“While you have .. targets on
screening uptake you cannot
truly claim to be giving people
choice…you have already
decided the ‘right’ decision” 3
“I'm sure the authorities look at
the figures of how many women
screened and think we adore the
programme where in reality we
are harassed and coerced into
complying”
(on cervical screening)3
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7 Facilitating informed choices in screening
“The condition should be an
important health problem as
judged by its frequency
and/or severity”
8 Facilitating informed choices in screening
“There should be an
effective intervention”
Information development by ‘user need’
As a person being offered a screening test
I need to understand the benefits and harms of
having the test
So that I can decide whether it is right for me to
have the test or not
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10 Facilitating informed choices in screening
Ability to use health information to make
decisions
Ability to use health information to make
decisions
11 Facilitating informed choices in screening
“Between 43% and 61% of English working age
adults routinely do not understand health
information”
Jonathan Berry, NHS England
Health literacy, numeracy and graphicacy
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The capacity to obtain, understand and act on….
Basic health information and
services e.g. leaflets
Numerical health information
e.g. probability
Health information in non-textual 2D
formats e.g. graphs and diagrams
DECISION
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Understanding harms to the individual
Further invasive procedures, e.g.
colonoscopy
Over
treatment
Psychological
impacts
Anxiety
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Difficult decisions
“It’s a **** decision”
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The screening environment
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“The enduring human fear of
what the future holds means
that it is never easy to
decline the promised
benefits of screening.
Such refusal seems to tempt
fate in a disturbingly primeval
way”
Iona Heath, GP, 2009 BMJ4
Time pressure
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“Due to the implementation process
a decision is required immediately…
therefore if there is some indecision
it is more common to recommend
screening and decline later”
(Midwife)5
Technology
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Social context of NIPT
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“Nearly 100%
accurate”“100% safe”
“Earlier, safe, more accurate”
“Midwife
says never
seen one
not
confirmed”
“NHS test
pointless”
“Uses the
baby’s DNA”
Over 99%
accurate for
Down’s
syndrome“worth every
penny”
Where we started…
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the condition being
screened for
the testing process
benefits and harms
potential outcomes
“A personal decision made to accept or decline a screening test based on
access to accurate, evidence-based information covering……..”
“There should also be the opportunity to reflect on what the test and its
results might mean to the individual”
Key points...
Alternative views exist on the value of screening
tests
Ability to use health
information to make
decisions is limited
The context of the screening offer matters
Informed choice is a complex
process - not an outcome
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References1 Hersch, Jolyn, et al. "Women’s views on over diagnosis in breast cancer
screening: a qualitative study." Bmj 346 (2013): f158.
2 https://www.canceractive.com/cancer-active-page-link.aspx?n=1420
3 How do we help people decide if screening is the right choice for them? Anne
Mackie, Posted on: 3 August 2015
4 Heath, Iona. "It is not wrong to say no." BMJ: British Medical Journal (Online)
338 (2009)
5 Ukuhor, Hyacinth O., et al. "A Framework for Describing the Influence of
Service Organisation and Delivery on Participation in Fetal Anomaly
Screening in England." Journal of pregnancy 2017
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