Learning about medicines:

1. Learning about medicines: needs a framework Andrew Herxheimer 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 CA seminar: Patient Information

3. 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 CA seminar: Patient Information

4. In deciding what to prescribe a doctor has to consider • the disease or problem • the treatment • the individual to be treated CA seminar: Patient Information

5. 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 CA seminar: Patient Information

6. 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 CA seminar: Patient Information

7. 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? CA seminar: Patient Information

8. 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 CA seminar: Patient Information

9. 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) CA seminar: Patient Information

10. 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 CA seminar: Patient Information

11. Atenolol –2How does it get to where it acts?It acts on the heart and reaches it via the blood CA seminar: Patient Information

12. Atenolol – 3How and how fast is it eliminated?It’s excreted in the urine A dose acts for 8 to 24 hours CA seminar: Patient Information

13. Atenolol – 4The bigger the dose, the bigger the effect?Treatment can start with 25mg/day or even 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 CA seminar: Patient Information

14. Atenolol – 5Differences in individual sensitivityMost elderly or thin people need only small dosesWomen may need smaller doses than menBlack people are less sensitive CA seminar: Patient Information

15. 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’. CA seminar: Patient Information

16. 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 CA seminar: Patient Information

17. 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 CA seminar: Patient Information

18. 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 CA seminar: Patient Information

19. 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 CA seminar: Patient Information

20. 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 CA seminar: Patient Information

21. 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 CA seminar: Patient Information

22. 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 CA seminar: Patient Information

23. 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 CA seminar: Patient Information

24. 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 CA seminar: Patient Information

25. Welcome to DIPEx CA seminar: Patient Information

26. DIPEx database : Narratives • summaries of main themes from interviews • illustrated with video, audio and written clips from the interviews – people telling their stories CA seminar: Patient Information

27. DIPEx database : Evidence • descriptions of the condition, prevalence, prevention • information about treatments, including evidence of effects • questions and answers • All indexed and searchable CA seminar: Patient Information

28. DIPEx studies now Complete on website: hypertension, prostate cancer, breast cancer, colorectal cancer Current: cervical screening, cervical cancer, testiscancer, carers of people with dementia Planned for 2002/03: epilepsy, rheumatoid arthritis, smoking cessation, malignant melanoma, lung cancer CA seminar: Patient Information