Transcript The sources and quality of information for patients Andrew Herxheimer

The sources and quality of
information for patients
Andrew Herxheimer
International Society of Drug Bulletins (ISDB)
& Database of Individual Patients’ Experiences
(DIPEx)
Information is needed at several
stages of an illness
1. When the problem has been identified:
What solutions are on offer?
What information will help in making
the best choice?
Effectiveness,
Convenience/ ease of use
Safety, Cost
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1. Sources on the choice
A: People
Doctor – can assess problems, knows about
medicines and non-drug treatments
 Pharmacist – knows more about medicines
than disease
 NHS Direct (24-hour helpline staffed by
trained nurses) – good on first-line options
 Friend/ family member – knows the patient,
but little about the choices

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1. Sources on the choice
B: Print - impersonal
 Reference
books, eg Home Doctor
 Booklets, leaflets, magazines
 Internet websites
Accessibility and quality vary greatly;
discussion with expert required
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Judging information quality
Two approaches:
A. Examine each item of material closely
B. Examine the sources – their
credentials, their work processes
A is laborious, slow, inefficient
B identifies organisations and processes
likely to produce good materials, and
likely to improve their materials further
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DISCERN criteria (1) : A good
publication on treatment choices –
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has explicit aims & achieves them
is relevant to consumers
makes sources of evidence explicit
gives the date of the information
is balanced and unbiased
refers to areas of uncertainty
describes how treatment works
Describes the benefits and risks of treatment
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DISCERN* criteria (2) : A good
publication on treatment choices –

describes what would happen without
treatment
 describes effects of treatment choices on
overall quality of life
 makes it clear that there may be more than
one possible treatment choice
 provides support for shared decision making
*www.discern.org.uk
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2. When the medicine has been
chosen
all the standard information on how to
take it, how long for, whether, when and
how to adjust dosage, precautions
 what to expect it to achieve
 possible problems to look out for
 and so on …..

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2. Sources on that medicine
A: People
 Pharmacist
– spoken advice,
variable
 Package leaflet – info and advice,
may be hard to understand/use
 Doctor – spoken advice, but
often hurried and insufficient
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2. Sources on that medicine
B: Print – impersonal
Package leaflet – info and advice, may
be hard to understand/use
 Compendia, Internet – mostly
reasonable, but can’t allow for the
individual
Very often the material needs discussion
with a professional to be grasped

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The problems with labelling
(Labelling = labels + leaflets)
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Wrong emphasis: mandatory
versus usable information
Poor layout and design
Poor comprehensibility
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These problems mean that
 Many
labels don’t meet consumers’
needs
 Inappropriate use is more likely
 Good health outcomes may be
reduced
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In the afternoon session to-morrow
Jerome Reinstein
will consider what to do about it:
A promising new approach to
Making medicine information work
[my last 2 slides were from his presentation]
3. While using the medicine:
how to know whether it is working
 what problems to watch for
 what to do when a problem occurs
 when to ask professional advice:
eg explaining unexpected events,
avoiding potential interactions

These questions are more complicated
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3. Sources for info during use
Package leaflet and websites are
potentially available at any time
 People who can consider the individual
are less accessible, but more useful
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The best strategy is to use both
if need be, preferably in that order.
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Printed information
 is
rarely sufficient
 is best used as a common starting
point for conversations between the
users of medicines and
professionals,
especially pharmacists and doctors
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But there’s another big problem
that leaflets and labels don’t address
Having the information is only half the job
- the other half is knowing how to use it
judgments must be made
They involve facts and values
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Organising the information on a medicine:
Key questions
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What type of medicine is it?
Does it cure, relieve symptoms, prevent a
problem, or help to maintain normal function?
What are its benefits and disadvantages?
How does it get to where it acts?
How & how fast is it eliminated?
The bigger the dose, the bigger the effects?
How do people differ in sensitivity to it?
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Basic concepts about medicines
should be taught in schools

They straddle biology, domestic science and
social science, and are easy to grasp
 They provide broader perspectives than
‘drug education’, which shouldn’t be separate
 They are easy and interesting to illustrate
from everyday experience
and lend themselves to simple projects
 The students can be encouraged and helped
to teach older family members – as happens
in many developing countries
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Adults need the basic principles
explained along with the standard
information, then they may sink in
I’ve no time to show an example now,
but can send you one (on atenolol)
by e-mail - please ask me:
[email protected]
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So how should we shape the future
of patient information?
1. Information can only be well used by
people with adequate ‘information
receptors’. That means they have to
understand the relevant concepts.
2. Ideally they should learn the rudiments
of critical appraisal: to be able to assess
the relevance, validity & reliability of
information.
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The future of patient information
- continued
3. Sources of reliable health information –
on diseases, treatments, nutrition, etc
must be identifiable as such.
4. Written information should be tested on
samples of real patients, to check that
most can use it effectively.
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