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Learning about medicines: needs a framework Andrew Herxheimer 24.5.02 CA seminar: Patient Information 1 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 24.5.02 CA seminar: Patient Information 2 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 24.5.02 CA seminar: Patient Information 3 In deciding what to prescribe a doctor has to consider the disease or problem the treatment the individual to be treated 24.5.02 CA seminar: Patient Information 4 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 24.5.02 CA seminar: Patient Information 5 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 24.5.02 CA seminar: Patient Information 6 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? 24.5.02 CA seminar: Patient Information 7 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 24.5.02 CA seminar: Patient Information 8 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) 24.5.02 CA seminar: Patient Information 9 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 24.5.02 CA seminar: Patient Information 10 Atenolol –2 How does it get to where it acts? It acts on the heart and reaches it via the blood 24.5.02 CA seminar: Patient Information 11 Atenolol – 3 How and how fast is it eliminated? It’s excreted in the urine A dose acts for 8 to 24 hours 24.5.02 CA seminar: Patient Information 12 Atenolol – 4 The 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/day But higher doses also cause side effects more often and more intensely 24.5.02 CA seminar: Patient Information 13 Atenolol – 5 Differences in individual sensitivity Most elderly or thin people need only small doses Women may need smaller doses than men Black people are less sensitive 24.5.02 CA seminar: Patient Information 14 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’. 24.5.02 CA seminar: Patient Information 15 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 24.5.02 CA seminar: Patient Information 16 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 24.5.02 CA seminar: Patient Information 17 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 24.5.02 CA seminar: Patient Information 18 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 24.5.02 CA seminar: Patient Information 19 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 24.5.02 CA seminar: Patient Information 20 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 24.5.02 CA seminar: Patient Information 21 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 24.5.02 CA seminar: Patient Information 22 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 24.5.02 CA seminar: Patient Information 23 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 24.5.02 CA seminar: Patient Information 24 Welcome to DIPEx 24.5.02 CA seminar: Patient Information 25 DIPEx database : Narratives • summaries of main themes from interviews • illustrated with video, audio and written clips from the interviews – people telling their stories 24.5.02 CA seminar: Patient Information 26 DIPEx database : Evidence • descriptions of the condition, prevalence, prevention • information about treatments, including evidence of effects • questions and answers • All indexed and searchable 24.5.02 CA seminar: Patient Information 27 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 24.5.02 CA seminar: Patient Information 28