the sources and quality of information for patients andrew herxheimer international society of drug...
TRANSCRIPT
The sources and quality of information for patients
Andrew HerxheimerInternational Society of Drug Bulletins (ISDB)
& Database of Individual Patients’ Experiences (DIPEx)
3 Sep 02 FIP Nice 2
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 choiceA: 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 choiceB: Print - impersonal
Reference books, eg Home DoctorBooklets, leaflets, magazines Internet websites
Accessibility and quality vary greatly;
discussion with expert required
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Judging information qualityTwo 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 – 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 medicineA: 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 medicineB: 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)
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 likelyGood health outcomes may be
reduced
In the afternoon session to-morrow Jerome Reinstein
will consider what to do about it:
A promising new approach toMaking medicine information work
[my last 2 slides were from his presentation]
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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
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 problemthat 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
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:
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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.