‘Ensuring access’ means making information both comprehensible and available to others. These two elements need to be of equal concern.
Hilda Bastian, The Power of Sharing Knowledge
As new health information sources are constantly being created, we have chosen not to list website addresses for you here but have listed some names of organisations and online resources that might be of interest. To find these you can type the names or titles into search engines such as ‘Google’ or ‘Yahoo’ or you could visit our ‘Smart Health Choices’ website for current links to evidence-based online information. http://www.health.usyd.edu.au/shdg/resources/ebooks.php/
Evidence-based healthcare sites primarily for health professionals
Many of these sites are aimed at health professionals. They provide the best broad information on the growing field of evidence-based medicine. There are many more and these are just a few that we would highly recommend.
The Cochrane Database of Systematic Reviews
Type in ‘Cochrane’ and find the Cochrane Library. This is part of an international group called the Cochrane Collaboration. The Cochrane systematic reviews are the summaries of high-quality evidence about effective treatments that we discussed earlier in this book. The abstracts (akin to executive summaries) are available free to anyone and in some countries you can access the full version of the systematic reviews. Search the electronic Cochrane Library for a systematic review on your area of interest (for example, osteoarthritis)
Medline via ‘PubMed’
If you type in ‘PubMed’ you’ll find this free version of Medline that is run by the US National Library of Health. You can search for original articles in most medical journals here by typing in a keyword from the article’s title and/or the authors surname or year of publication. All of the abstracts (executive summaries) are available free of charge and some of the complete articles are also linked.
Centre for Evidence-Based Medicine
This is a UK site aimed mainly at health professionals, but has useful background information on evidence-based medicine and links to relevant journals, including ones on evidence-based nursing and mental health.
Bandolier
This is a monthly journal produced in the UK which started in 1994 and features articles mainly on evidence-based primary care. They have a special website section about complementary and alternative medicine, the Oxford Pain Internet site, the Healthy Living site and the Migraine site, each of which features evidence summaries in these areas.
Users’ Guide to the Medical Literature
This is available under subscription and is an interactive online tool for guiding clinicians in appraising evidence in their daily practice. It has been developed by the international ‘Evidence-Based Medicine Working Group’ who wrote a well-known series of articles for the Journal of the American Medical Association (JAMA) during the late 1990s and early 2000s. The checklists for appraising the quality of research evidence and for applying them in practice have been included in this interactive online version.
Evidence-based healthcare sites for consumers and healthcare providers
This list is by no means exhaustive. It merely highlights a few good quality resources to get you started.
Ottawa Decision Aid Inventory
This website has a list of decision aids to help weigh up the pros and cons of test and treatment options. Many of these are accessible free of charge. The site is managed by researchers and health professionals at the University of Ottawa.
Sydney Health Decision Group
This website was developed by University of Sydney researchers and also includes free online decision aids, pod-casts of radio programmes, clinical practice guidelines and hosts the chapter summaries and links for Smart Health Choices.
DISCERN
This contains a useful tool for evaluating the quality of health information for consumers and was developed by researchers in Oxford. We refer to it in Chapter 12 of this book.
DiPEx
This online UK resource of a broad range of patient stories was referred to in Chapter 9.
Informed Health Online
This resource originated from the Cochrane Collaboration and is now funded by the German government. It contains plain language summaries of many systematic reviews from the Cochrane Library. It also has other video and decision aid interactive resources.
Medline Plus
This is the consumer version of Medline and is managed by the US National Library of Medicine. It contains many useful factsheets and summaries of evidence in plain language.
National Center for Complementary and Alternative Medicine
Run by the US National Institutes of Health, it contains up-to-date summaries of research on Biologically Based Practices, Energy Medicine, Manipulative and Body-Based Practices, Mind-Body Medicine and Whole Medical Systems
Best Treatments
This is a plain English version of ‘Clinical Evidence’, a summary of evidence on common problems. It is produced by the British Medical Journal (BMJ) and is available free of charge in some countries only.
National Library for Health (UK)
The Clinical Knowledge Summaries provide a lot of evidence summaries on a range of topics, including patient information leaflets that can be downloaded. From the library’s homepage you can also access Bandolier, the Cochrane Library, Patient.co.uk and NHS Direct.
Health Insite
This is the Australian Government’s consumer website for health information and meets the kind of quality standards that we have discussed in this book.
General government health departments and other official organisations
We have included only a few main sites from the UK, the USA, Australia and New Zealand. For other country-specific sites you should search for your government health department.
The United Kingdom
National Health Service (NHS)
Information about health services, links to cancer screening and other programmes.
National Institute for Health and Clinical Excellence (NICE)
Guidance and advice on promoting health and preventing disease.
Australia
National Health and Medical Research Council (NHMRC)
An index of NHMRC publications for consumers and health professionals. They include clinical practice guidelines, and information booklets on a wide range of topics, such as child and elderly health, dentistry, drugs and poisons, infectious diseases and environmental health.
Department of Health and Ageing, Australian Government
Includes policies, health service information and links to specific programmes about national health priority areas, immunisation, screening programmes and medication.
New Zealand
New Zealand Guidelines Group
A wonderful evidence-based website of clinical guidelines for practitioners and consumers. It is particularly strong in cardiovascular disease prevention.
United States of America
Agency for Healthcare Research and Quality (US Department of Health and Human Services)
This contains guidelines and policies and has an extensive consumer and patient section.
Travel and vaccine advice – Centers for Disease Control and Prevention
General travel information and advice that is specific to country and individual travel itineraries can be accessed along with up-to-date bulletins about disease outbreaks and health alerts from around the world.
Cancer councils and specialist associations
Cancer councils are generally community-based organisations committed to preventing cancer and enhancing the quality of life for people with cancer and their families. They provide information, education and support, and also fund research and professional development. Specialist associations exist for many diseases, disorders and other conditions such as arthritis, diabetes and heart disease.
Media
There is an increasing number of resources that give a critical review of health stories mainly from the print media. As many TV and radio stories arise from the print releases, you will often find the stories that you are looking for on these sites. Once again, this list is not exhaustive but offers a few examples for your interest. We have included some news websites that will be ideal for testing your newly acquired ‘smart health choice’ skills.
Hitting the Headlines (UK )
MediaDoctor (Australia), MediaDoctor Canada and Health News Review (USA)
Provides critical reviews of the latest media reports in these countries. There are also public discussion sections and opportunities to rate most articles.
ABC Radio’s The Health Report (Australia)
Provides access to summaries and transcripts of programmes.
The New York Times Health Section
Contains articles on recent health issues and research. Here you can test your skills after reading this book.
BBC Health Section
Contains articles on recent health issues and research. Here you can test your skills after reading this book.
Some books that you might find interesting
Angell Marcia. The Truth About Drug Companies: How they deceive us and what to do about it. Scribe Publications; 2005. A former editor of the New England Journal of Medicine blows the lid on the influence of pharmaceutical companies upon research and clinical practice.)
Evans Imogen, Thornton Hazel, Chalmers Iain. Testing Treatments – Better research for better healthcare. London: The British Library; 2006. Another book that takes a scientific approach to health-care decisions.
Gawande Atul. Complications: A Surgeon’s Notes on an Imperfect Science. Sydney, Australia: Allen & Unwin; 2002. An insider’s well written account of the fallibility of medicine.
Gray Muir.
The Resourceful Patient. www.resourcefulpatient.org. Hard copies can be ordered from this website or the book can be read online. It gives further tips on how to find and use good health information.
Morra Marion, Potts Eve. Choices. 4. London: Harper Collins; 2001. (Choices: The Most Complete Sourcebook for Cancer Information) (paperback)
McCall Timothy B. Examining Your Doctor, A patient’s guide to avoiding harmful medical care. New York: Carol Publishing Group; 1995. A thoroughly researched book about how to obtain the best quality health care. Written by a physician and oriented towards American health care.
Moynihan Ray. Too Much Medicine? The business of health – and its risks for you. Sydney: ABC Books; 1998. By a journalist who makes a critical analysis of the forces driving modern medicine, and how this can be to patients’ detriment.
Moynihan Ray, Cassels Alan. Selling Sickness: How drug companies are turning us all into patients. Allen & Unwin; 2005. A critical examination of disease-mongering by pharmaceutical companies and other vested interests.
Maddern Guy. Questions You Should Ask Your Surgeon. Sydney: Bay Books; 1994. An easy-to-read guide to choosing a surgeon.
Walton Merrilyn. The Trouble with Medicine. Sydney: Allen & Unwin; 1998. Walton, now an academic, previously headed a statutory authority that investigates patients’ complaints in New South Wales. She describes some of the issues that can lie behind poor clinical or unethical medical practices.
Duckworth John RA. The Official Doctor/Patient Handbook – A consumer’s guide to the medical profession. UK: Harriman House Publishing; A book describing the different medical specialties, some medical jargon and how to find your way through the medical system. As it is written with the British medical system in mind, some aspects may not be applicable to all countries.
Little Miles. Humane Medicine. Cambridge: Cambridge University Press; 1995. By a retired professor of surgery turned philosopher, this book presents a philosophical and ethical perspective on some of the challenges facing medicine.
Moore Thomas J. Deadly Medicine: Why thousands of patients died in America’s worst drug disaster. New York: Simon & Shuster; 1995. An account of how market forces, rather than valid research, influenced the introduction in the 1980s of drugs that were supposed to prevent deaths from heart rhythm abnormalities.
Russell Louise B. Educated Guesses: Making policy about medical screening tests. Berkeley, CA: California University Press; 1994. A book about screening for prostate cancer, cholesterol and cervical cancer. Aimed at policy makers, but reasonably accessible to consumers.
Gilovich Thomas. How We Know What Isn’t So: The fallibility of human reason in everyday life. New York: The Free Press; 1991. A fascinating look at how people hold on to erroneous beliefs even in the face of evidence to the contrary. For everyone.
Dewdney AK. 200 per cent of Nothing – From ‘percentage pumping’ to ‘irrational ratios’. For anyone with an interest in numbers and logic.
Laudan Larry. The Book of Risks – Fascinating facts about the chances we take every day. USA: John Wiley & Sons, Inc.; 1994. An easy to read, not very technical book that puts daily risks into perspective.
Moore Andrew, McQuay Henry. Bandolier’s Little Book of Making Sense of the Medical Evidence. Oxford: Oxford University Press; 2006. Written for health professionals but readable to others with an interest in learning more about evidence-based health care.
Gilbert H, Welch M. Should I be tested for cancer? Maybe not and here’s why. Berkeley, CA: University of California Press; A challenging look at weighing up the pros and cons of cancer screening and testing.
Gigerenzer G. Reckoning with Risk Learning to live with uncertainty. London: Penguin; 2003. A fascinating look at how we understand and live with chance and probabilities.
The following books are written for health professionals but may be accessible to those who want something heavy duty:
Eddy David M. Clinical Decision Making – from theory to practice. USA: Jones & Bartlett;
Fletcher Robert, Fletcher Suzanne, Wagner Edward. Clinical Epidemiology – The essentials. Baltimore, MA: Williams & Wilkins; 1988.
Muir Gray JA. Evidence-based Healthcare – How to make policy and management decisions. London: Churchill Livingstone; 1997.
Runciman Bill, Merry Alan, Walton Merrilyn. Safety and Ethics in Healthcare: A guide to getting it right. Ashgate; 2007.
Sackett David, Richardson Scott, Rosenberg William, Haynes Brian. Evidence-based Medicine – How to practice and teach EBM. Oxford, UK: Elsevier; 2001.
Sox Harold, Blatt Marshal, Higgins Michael, Marton Keith. Medical Decision Making. USA: Butterworths; 1988.
Cochrane AL. Effectiveness and efficiency – Random reflections on health services, The Rock Carling Fellowship 1971. Cambridge: The Nuffield Provincial Hospitals Trust; 1972.
