The sources and quality of information for patients Andrew Herxheimer International Society of Drug Bulletins (ISDB) & Database of Individual Patients’

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

3 Sep 02 FIP Nice 3

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

3 Sep 02 FIP Nice 4

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

3 Sep 02 FIP Nice 5

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

3 Sep 02 FIP Nice 6

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

3 Sep 02 FIP Nice 7

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

3 Sep 02 FIP Nice 8

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 …..

3 Sep 02 FIP Nice 9

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

3 Sep 02 FIP Nice 10

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


The problems with labelling(Labelling = labels + leaflets)

Wrong emphasis: mandatory versus usable information

Poor layout and design Poor comprehensibility


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]


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


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.


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


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


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?


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


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]


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.


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.

Documents

The sources and quality of information for patients Andrew Herxheimer International Society of Drug Bulletins (ISDB) & Database of Individual Patients’