The sources and quality of information for patients

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The sources and quality of information for
patients

• Andrew Herxheimer
• International Society of Drug Bulletins (ISDB)
• Database of Individual Patients Experiences
  (DIPEx)

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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
• Examine each item of material closely
• 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 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
  cant 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 dont 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
Reinsteinwill consider what to do about it
A promising new approach to Making 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 theres another big problemthat leaflets and
labels dont 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 shouldnt 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

• Ive no time to show an example now,
• but can send you one (on atenolol)
• by e-mail - please ask me
• andrew_herxheimer_at_compuserve.com

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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.