24.5.02 CA seminar: Patient Information 1

Learning about medicines:

needs a framework

Andrew Herxheimer

24.5.02 CA seminar: Patient Information 2

We need information to decide whether to use a medicine or not if yes, which to choose how to use it, for how long what to look out for while using it whether some event is connected with

the medicine whether and how to change the dose or

stop

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The information may not be enough to enable us to decide – because

we don’t know enough about the problem we want to treat

or we can’t easily apply it to our own circumstances

or we lack experience & confidence

So we need to discuss it

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In deciding what to prescribe a doctor has to consider

the disease or problemthe treatmentthe individual to be treated

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Half the job is having the information,

the other half, knowing what to do with it:

judgments must be made.

They involve facts and values

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Weighing up benefits and harms

can be complicated because the natural course of a disease varies an expected benefit matters more to

some people than to others disadvantages of treatment, including

possible harms, worry some more than others

everyone has personal preferences

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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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An example High blood pressure needing drug treatment

Ranking what’s on the menu:

Effectiveness

Safety

Quality & completeness of information

Convenience

Patient’s preference

Cost

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Three types of drug to consider:(1) a diuretic(2) a beta-blocker(3) an ACE inhibitor

Each helps to prevent stroke and heart attack Each is safe – except (1) in gout,

(2) in asthma, (3) in kidney disease Their side effects are mostly acceptable A lot is known about all three, none are new All are convenient to use (1) and (2) cost less than (3)

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Let’s look at atenolol, a beta-blocker

Benefits v. disadvantages

+ atenolol reduces high BP, helps

prevent angina, stroke, heart attack

– can worsen asthma, cause tiredness,

cold hands & feet

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Atenolol –2

How does it get to where it acts?

It acts on the heart and reaches it via the blood

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Atenolol – 3

How and how fast is it eliminated?

It’s excreted in the urine

A dose acts for 8 to 24 hours

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Atenolol – 4

The bigger the dose, the bigger the effect?

Treatment can start with 25mg/day oreven less

The dose can if necessary be increased to 50 or even 100mg/dayBut higher doses also cause side effects

more often and more intensely

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Atenolol – 5

Differences in individual sensitivity

Most elderly or thin people need only small dosesWomen may need smaller doses than menBlack people are less sensitive

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Concordance: achieving shared goals in medicine use

To achieve shared goals,

professionals and patients need to understand each other,

and to understand how the other thinks.

Doctors must not only inform, but listen and explain.

‘Doctor’ originally meant ‘teacher’.

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But crash courses in consultations cannot do very much

There’s far too much else to take in Patients are often anxious or tense Time is short Learning/ teaching is rarely on the

agenda for either patient or doctor

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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.

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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1. 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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2. Critical appraisal workshops for patients/ consumers/ health service users can enable more people

to contribute their experience & views to

research agendas

ethics committees

health service management

independent self-help groups to recognise misinformation & manipulation

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3. Identifying reliable and helpful information

Accreditation of information sources nationally & internationally: kitemarks?

Transparent official endorsement of trustworthy information, eg using the DISCERN criteria

Links to National electronic Library of Health (NeLH)

Internet sites are a special problem

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4. Written information should be tested

Until now most information is produced by professionals who decide what information patients/ consumers need, and not tested.

We must involve consumers in the design of the information, and test leaflets, etc, on samples of the patients for whom they are intended, and improve the material until at least 80% of people can understand and use it effectively.

This has been pioneered in Australia

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Pharmaceutical promotion:

The truth, the half-truth, and nothing like the truth

Direct-to-consumer advertising of

prescription medicines, as in the US, spreads misinformation, distorts health care, does not improve health, & increases costs

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Last but far from least: professionals must learn from patients and carers Ask them what they think of the treatment … how they use it Listen to their experiences – eg DIPEx

(Database of Individual Patients’ Experiences of illness)

Enable patients to report adverse events directly to regulatory authorities & companies

Help patients to learn from the experiences of others

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DIPEx website Analysis of a broad range of people’s

narrative descriptions of their experience

Linked to evidence-based information about treatments, resources, support groups

Overlapping information needs - presented for patients, family, teachers, students, health professionals, policy makers, researchers

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Welcome to DIPEx

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DIPEx database : Narratives

• summaries of main themes from interviews

• illustrated with video, audio and written clips from the interviews – people telling their stories

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DIPEx database : Evidence

• descriptions of the condition, prevalence, prevention

• information about treatments, including evidence of effects

• questions and answers

• All indexed and searchable

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DIPEx studies now

Complete on website: hypertension, prostate cancer, breast cancer, colorectal cancer

Current: cervical screening, cervical cancer, testis cancer, carers of people with dementia

Planned for 2002/03: epilepsy, rheumatoid arthritis, smoking cessation, malignant melanoma, lung cancer