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

3 Sep 02 FIP Nice2 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 Nice3 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

3 Sep 02 FIP Nice4 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

3 Sep 02 FIP Nice5 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

3 Sep 02 FIP Nice6 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 Nice7 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 *

3 Sep 02 FIP Nice8 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 Nice9 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

3 Sep 02 FIP Nice10 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

3 Sep 02 FIP Nice11 The problems with labelling (Labelling = labels + leaflets) Wrong emphasis: mandatory versus usable information Poor layout and design Poor comprehensibility

3 Sep 02 FIP Nice12 These problems mean that Many labels don’t meet consumers’ needs Inappropriate use is more likely Good health outcomes may be reduced

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 Sep 02 FIP Nice14 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 Sep 02 FIP Nice15 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.

3 Sep 02 FIP Nice16 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

3 Sep 02 FIP Nice17 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

3 Sep 02 FIP Nice18 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?

3 Sep 02 FIP Nice19 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

3 Sep 02 FIP Nice20 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 - please ask me:

3 Sep 02 FIP Nice21 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 Sep 02 FIP Nice22 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.