Transcript Slide 1
Evidence A Cochrane Consumer Perspective By Janet Wale The Cochrane Collaboration Cochrane Consumer Network (CCNet) supports consumer participation in the work of The Cochrane Collaboration - in providing a consumer perspective to Cochrane reviews, review summaries - and other research and dissemination activities within the Collaboration. The Cochrane Collaboration is: – a not-for profit organisation registered as a charity in the UK – made up of groups across the globe with the purpose of developing the systematic reviews of best evidence that make up The Cochrane Library – to inform evidence-based health care. Evidence in its broadest sense refers to anything that establishes a fact or gives reason for believing something The most immediate form of evidence available to an individual is personal observation - what they can see and feel for themselves. This can be ‘subjective’ and difficult to measure or quantify, which is what science is about. Collecting evidence Evidence as used by researchers is collected systematically in an attempt to avoid the bias inherent in anecdotal evidence. Bias is any factor, recognised or not, that distorts or influences findings or thinking, usually in the sense for having a preference to one particular point of view or perspective. One is generally said to be biased if one's powers of judgment or assessment are influenced by the biases one holds. We define evidence-based health care as a combination of current best research evidence, the expertise of the healthcare provider, and patient values and preferences within a social and geographical environment. Evidence-based health care is about making decisions on health care for and with individuals, families and communities. – For this the public needs ready access to quality healthcare information. – Patient safety is also an issue. The WHO World Alliance for Patient puts the patient and consumer at the centre of an international movement to improve patient safety. Serious medical harm can result from medical error – because of human error, inactivity or lack of appropriate action, and where the patient was given inferior treatment. Melbourne Health ‘Patient policies’ are: Freedom of information (access to medical records) Patient privacy (information to remain confidential) Partnership in care – The partnership between the patient and staff is one of the most important elements to providing and receiving the right care and treatment. Understanding the rights and responsibilities of all parties involved is key to a successful partnership. – The Melbourne Health Partnerships in Care brochure details your rights in relation to accessing services, making complaints or suggestions, and your decisions about receiving treatment about your care. It also outlines: Your (the patient’s) responsibilities to ensure the right decisions about the care and treatment you need or want are made. www.mh.org.au/Royal_Melbourne_Hospital/www/353/1001127/displayarticle/1 001187.html How to determine ‘the best treatment’? Where Scientists are interested in process ------------ And The public is looking for a product of medical research Certainty - that can inform what actions they take. ‘The best treatment’? In health care it is ultimately the signs and symptoms that a patient experiences that is most relevant to their treatment. Much work is being done on ‘patientreported outcomes’ and breaking down complex measures (such as ‘quality of life’ and wellbeing) into key factors that can demonstrate meaningful trends where the overall measure cannot. “Self-management, more than adherence, underlines the role of the patient in the decisions and the execution of the therapy. The disease and the therapeutic regimen require a series of decisions that have to be executed properly in order to control the disease.” Maria HF Grypdonck / EVIDENCE-BASED PRACTICE 1377 QUALITATIVE HEALTH RESEARCH, Vol. 16 No. 10, December 2006 1371-1385 Why evidence? – to provide controlled clinical observation Rational(ised) physiological reasoning based on current knowledge and expert opinion has not always been for the public good. Why randomised controlled trials? Why randomised controlled trials To pin down causality - relationships between treatments and observed effects. Yet Tested at a group level - not everyone in a group responds in the same way The relevance of the defined outcomes for consumers eg biomedicalchemical markers (creatinine levels) or physiological outcomes (renal function, blood pressure) compared with clinical (stroke, heart attack or death) Marginal, highly vulnerable or disadvantaged people are poorly represented in randomised studies; as are people at the two ends of the life span. – the reason why a healthcare practitioner should make decisions based on the evidence and his or her clinical judgment Qualitative data supports in: describing what the findings of research mean, to contextualise and support the findings from randomised controlled trials providing explanations and understanding eg adherence to, or self-management of, a therapeutic regimen collecting people’s accounts of what the intervention means to them, what actually takes place - to inform the researcher and the practitioner identifying factors that may be important in a situation that require adaptation of the intervention eg Tai Chi to prevent falls – not acceptable in UK judging the desirability of the outcomes and finding clues to desirable and undesirable side effects. Large observational studies: 1. 2. are important to identify the adverse effects, unintended consequences or unexpected harms with interventions eg higher rates of vaginal cancer among the daughters of mothers who took diethyl stilboestrol or DES to prevent miscarriage or stillbirth. Yet at times when randomised trials were financed to test results from large observational studies, the findings were not confirmed: Hormone replacement therapy for postmenopausal women is an important example Antioxidant vitamins E, C and beta carotene to prolong life Scientific results are almost exclusively mediated to the public by journalists Coffee, Fish Oil May Combat Alzheimer's Bloomberg Blood pressure drugs, caffeine, and fish oil all may help treat, prevent, or delay Alzheimer's disease, researchers found in separate studies. http://www.boston.com/news/health/articles/2007/11/08/coffee_fish_oil_may_combat_alzh eimers/ NSAIDs Protect Against Parkinson's Disease HealthDay Taking over-the-counter pain medicines called non-steroidal anti-inflammatory drugs may reduce the risk of Parkinson's disease, according to a study by researchers at the UCLA School of Public Health in Los Angeles. http://health.yahoo.com/news/healthday/nsaidsprotectagainstparkinsonsdisease.html Birth Control Pills May Clog Arteries Bloomberg Birth control pills taken by about 100 million women worldwide may clog arteries when taken more than 10 years, according to a study. Women on oral contraceptives were 20 percent to 30 percent more likely to have buildup of fat and cholesterol in their arteries, reducing blood flow, according to a study of 1,301 Belgian women ages 35 to 55. http://tinyurl.com/2mchqa Health Behavior News Service Point-of-care health information – for doctors Online systems Summaries/synopses Systematic reviews - synthesis Expert opinion, textbooks Information for patients Where and how do the public look for evidence-based healthcare information – in a way that is accessible to them? How do patients talk with their healthcare providers about an evidence base to health care – and whose prerogative is it? Sir Muir Gray (UK) advocates to educate patients Patients want information and to take responsibility in health care; they have the internet so education level is not so important. Consultation time with health providers is too short, and pressured Easier to educate patients (who have the experience of living with the condition) than to re-train doctors – Build knowledge into the care pathway Non-disease specific websites In UK www.besttreatments.net (available in UK, New Zealand) www.discern.org.uk www.library.nhs.uk http://www.jr2.ox.ac.uk/bandolier/ (the use of evidence in health, healthcare, and medicine) www.nhsdirect.nhs.uk www.nhschoices.nhs.uk Putting you first, NHS Choices is the new service that helps you to make the most of your health and get the best out of the UK's healthcare system. This preview site will then transfer to www.nhs.uk. www.dipex.org (patient stories) www.healthdialog.com/hd/Ancillary/UK/ (patient stories) www.soundshealthy.org (radio and podcasts) http://cks.library.nhs.uk (Clinical Knowledge Summaries, practical, reliable, evidence-based for primary and first-contact care, a central resource for the National Library for Health) http://www.pickereurope.org/ re patient driven quality (combining clinical data with both patientreported health outcomes and a measurement of patient experience [http://www.pickereurope.org/page.php?id=73 and http://www.chks.co.uk/index.php?PDQ] http://www.peopleandparticipation.net/display/Involve/Home www.involve.org.uk In Australia www.healthinsite.gov.au www.labtestsonline.org.au (Australasian Association of Clinical Biochemists) www.betterhealth.vic.gov.au/ www.mydr.com.au/ www.nps.org.au In North America www.medlineplus.gov www.clinicaltrials.gov http://decisionaid.ohri.ca/index.html (Canada, decision aids)