Verbal

It is often enough to have your practitioner discuss with you what the evidence-based guidelines recommend, or tell you about recent systematic reviews or randomised controlled trials. Whether this will be sufficient will depend on the seriousness of your condition and your relationship with the practitioner. Don’t forget to ask about the evidence, even if it is not offered. Asking the question ‘What’s the evidence?’ is more likely to obtain a detailed response than simply asking ‘Is there good evidence to support this?’ Some cancer specialists are realising that it is sometimes difficult to absorb everything that is being discussed and they offer to record the consultation so that cancer patients can go over things and think about them at home.

Written leaflets, booklets

It is often useful to have some written information to take away to consider and discuss with others. It may be some information prepared for patients and consumers, or evidence-based guidelines or even systematic reviews or randomised controlled trials.

However, not all written information is evidence based or of good quality. An audit of breast screening invitation letters across seven countries showed that they tended to over-emphasise the benefits of mammography and under-emphasise potential risks. In most cases, women were not given detailed information about the likely impact of mammography screening.³

A very useful checklist has been developed called the DISCERN instrument. It can be downloaded free or used online at www.discern.org.uk and is designed to help assess the quality of consumer health information. If you really want to check out the reliability of a source when trying to answer the ‘smart health choice essential’ questions, then the DISCERN instrument is excellent.⁴ The main quality criteria are as shown in the box.

Electronic

Increasingly, this is the way practitioners will be accessing information for you. Keeping written materials up to date is becoming impossible in this rapidly changing world.

Rather than digging out a photocopied leaflet from the bottom of the filing cabinet when you present with a whiplash injury, practitioners will be more likely to download the most recent consumer version of evidence-based guidelines and print you a copy to take home, complete with instructions on neck exercises and evidence-based advice on what to do and what not to do. These resources are often available in several languages. Another good example is Cervical Screening: the facts, available in 19 languages at http://www.cancerscreening.nhs.uk/index.html

Practitioners may also search the medical literature for you if there is time during the consultation. You can even follow up on these sources at home. As we have mentioned already, the Cochrane Library is available free in a number of countries and Medline, which is run by the US National Library of Medicine, is available all over the world via PubMed. A more comprehensive list of resources is available in Chapter 15.

Instead of thumbing through a vaccine handbook when asked what vaccines you will need for an upcoming backpacking trip to south-east Asia, practitioners may look up the Centers for Disease Control and Prevention website at www.cdc.gov/travel. This website is updated daily and gives advice about the latest outbreaks around the world including bird flu and, before that, SARS (severe acute respiratory syndrome). You can type in what countries and regions you will be visiting and get advice on immunisations and antimalarials, plus other valuable information about water quality and other travel hazards.

Below is an example of how you might obtain evidence from a practitioner. In brackets we show how the conversation relates to the five questions raised in Chapter 5.

Robert is travelling back from a trip to the USA, browsing through a magazine he had bought there. He notices an advertisement for a particular antibiotic to treat childhood ear infections, which describes what antibiotics are and how they work, but does not provide any information on whether they do actually work. Robert ponders on this. A while back, his 3-year-old son, Jeremy, had a rash that was thought to be a side effect of a course of antibiotics. This has made Robert well aware that any potential benefit may be bought at some harm.

A few weeks later, Jeremy develops a fever and complains of a sore ear, and Robert takes him to his doctor, Frank, who diagnoses a middle-ear infection.

Frank:

‘A course of antibiotics should do the trick. Keeping in mind that he reacted adversely to the last lot, I’ll prescribe a different one this time.’

Robert:

‘I was wondering, Frank, are antibiotics really necessary? I’m loath to give him yet another course unless it’s absolutely necessary. What will happen if we wait for a while to see if it gets better?’ [Q1: What will happen if I wait and watch?]

Frank:

‘Ear infections are likely to be bacterial, and I always prescribe antibiotics in these situations.’

Robert:

‘I see. So are antibiotics the only option then?’ [Q2: What are my options?]

Frank:

‘Well another option is to treat with paracetamol to relieve the fever and pain, but it won’t have any effect on the infection itself or possible complications from the infection. Remember, Robert, even though antibiotics have risks, they’re very low.’

Robert:

‘Mmmm. I suppose what I’m after is some idea of how effective antibiotics really are for ear infections. You say the risk is low, but it may not be worth taking if there’s no proven benefit. And I know paracetamol is pretty safe.’ [Q3: What are the benefits and harms of the options?] ‘Is there an evidence-based guideline? Or a randomised controlled trial?’

Frank:

‘As a matter of fact, I’ve used the Cochrane Library a number of times. Let’s see what it says about ear infections.’ Turning to the computer on his desk, Frank searches for the relevant abstract and finds a systematic review of several randomised controlled trials.⁵ To his surprise, antibiotics do not seem to have any effect in reducing pain during the first day of the infection. After an average of 4 days, 80 per cent of patients settle without treatment. However, for those 20 per cent of children who still have pain after that time, antibiotics do seem to help.

Frank:

‘Well, there you are then. From this it would seem there’s no harm in waiting for 24 hours to see how Jeremy settles just with paracetamol – if that’s what you want to do. I’ll give you a prescription for antibiotics just in case you need it after that.’ [Q4: How do the benefits and harms weigh up for me?]

Robert:

‘Sounds perfect, thank you. I’ll let you know how he does. By the way, I found that very helpful. I have all the information I need for now. Thanks again.’ [Q5: Do I have enough information to make a choice?]

This is a very satisfactory outcome for Robert and Jeremy, and for Frank too.

Evidence from the Cochrane Library

As discussed in Chapter 10, the Cochrane Library provides what is almost certainly the most powerful, growing, single source of evidence about the effects of healthcare. It provides regularly updated, electronically accessible systematic reviews on thousands of treatments. Recently the Cochrane Collaboration decided to withdraw any systematic review that had not been updated within the last 5 years. So you should be fairly confident that the information there is up to date. Another new initiative is that many of the systematic reviews now have lay summaries in plain English, which should make the evidence much more accessible to everyone, not just high-powered researchers!

Consumer health bodies and self-help groups

There are many groups that have been largely set up by consumers to support each other and offer information, advice and advocacy for others suffering with the same condition. One example in the UK is Breast Cancer Care (www.breastcancer.org.uk) and in Australia the National Breast Cancer Network of Australia (www.bcna.org.au) whose website contains a range of patient stories, brochures, booklets and links to other organisations. Newsletters and support groups are also linked. A more comprehensive list is included at the back of this book.

General government health departments and other official organisations

These can provide information about health policies and contact details for other organisations. Some may be able to provide information about hospitals and other health services, such as whether they are accredited or have services for patient support or complaints. They may also be able to investigate if you have had problems with a health service or product. In the UK the NHS National Library for Health at http://www.library.nhs.uk/ provides evidence-based guidelines and consumer information. In Australia, the National Health and Medical Research Council (NHMRC) produces a variety of information booklets and guidelines aimed at consumers and health professionals (www.nhmrc.gov.au/publications). State governments also provide consumer health information on their websites.

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. For the UK go to Cancer Research UK (www.cancerresearchuk.gov) and in Australia links to the Cancer Council in each state can be found at Cancer Council Australia (www.cancer.org.au/Home.html). Specialist associations exist for many diseases, disorders and other conditions. To find a specialist service or a medical specialist appropriate to your needs in your area, in the UK look via NHS Direct (www.nhsdirect.nhs.uk/). In Australia the Australian Medical Directory, apart from listing the details of all registered medical practitioners, includes a section on professional and specialist medical groups.

Complementary medicine or alternative health associations

There are many complementary medical associations, representing both medically qualified and non-medical practitioners. Although there is some good quality research in this area, on the whole there are fewer high-quality studies investigating complementary than orthodox therapies. The same evaluation criteria should be applied to all doctrines of healthcare. Examples of good studies on complementary medicine are available on the Cochrane Collaboration website and are published in major medical journals.

University research groups

Some research groups make their evidence-based tools available for consumers on their own websites. Decision aids, such as the ones we saw earlier for preventing strokes in patients with atrial fibrillation, can be found on the Ottawa Health Research Institute website (decisionaid.ohri.ca/decaids.html) and the Sydney Health Decision Group website (www.health.usyd.edu.au/shdg). The German Institute for Quality and Efficiency in Healthcare has been publishing consumer-friendly versions of Cochrane reviews at Informed Health Online, www.informedhealthonline.com. Harvard University also has a disease risk assessment tool at www.yourdiseaserisk.harvard.edu, and the list goes on.

Local hospitals and family practices

Some local hospitals may have information resources or ideas on where to get the information that you need. Increasingly, the larger hospitals in many countries will provide substantial patient information on their websites. For example, Great Ormond Street Hospital for Children in London (UK) and the Royal Children’s Hospital in Melbourne (Australia) have comprehensive sections for parents and children (www.ich.ucl.ac.uk and www.rch.org.au). Increasingly, many general practices are putting up websites with information about their doctors and practice facilities. Some are also adding recommended health information websites.

How people use the internet in healthcare decision-making

The internet is a common source of health information for consumers. Surveys of internet use have consistently shown that more than half of internet users access health information. US reports claim that 62 per cent of internet users, or 73 million people, in the USA have gone online at some point in search of health information and about 6 million people go online for advice in a typical day.^{6, 7} Most commonly people were looking for disease information, material about weight loss and facts about prescription drugs. Typical health advice seekers went online only occasionally to look up something specific and most of them did so without getting any advice from family, practitioners or others on where to look for reliable information. Despite this lack of guidance, most people said that they found useful websites and that it had helped them in their health-care decision-making.

People varied a lot in whether they would systematically check that a site could be trusted. Only a quarter said that they always looked for quality criteria such as the source of the information and when it was posted. But most people (73 per cent) said that at some point they had decided not to rely on a particular website. Most commonly they had rejected it because it appeared to be overly commercial, they couldn’t work out how up to date it was, it had an unprofessional design or they couldn’t find the source of the information.

There’s no doubt that with so many home computers now linked to the internet ‘surfing the net’ is a very convenient way for patients to look things up. No longer do you have to go to your local library or bookstore in search of the information that you want. The internet is not just convenient, it’s also flexible. People generally don’t know in advance how much health information they will need. At different points in time they will want different information on different topics and on the same topics at different levels of detail. The internet can accommodate this constantly changing requirement for information.

One UK study of cancer patients and their families found that people used the internet in many different ways. Some of the questions for which they sought answers were very similar to the five questions from the ‘smart health choice essentials’. They fit under seven broad categories suggested by Ziebland and quoted here below:⁸

1. Before visiting the doctor: to discover the possible meaning of symptoms.
2. During investigations: to seek reassurance that the doctor is doing the right tests; to prepare for the results; and to improve the value of the consultation.
3. After the diagnosis: to gather information about the cancer (including information that is ‘difficult’ to ask about directly); to seek advice about how to tell children; to contact online support groups; to seek second opinions; to make sense of the stages of disease; to interpret what health professionals have said; and to tackle isolation.
4. When choosing treatments: to find information about treatment options and side effects, experimental treatments, research, and alternative and complementary treatments.
5. Before treatment: to find out what to take to hospital, what will happen, what it will be like, what to expect of recovery, how to identify and prepare questions to ask the doctors.
6. Short-term follow-up: to find information about side effects, reassurance about symptoms, advice about diet, complementary treatments, benefits and finances; to check that the treatment was optimal and what the perceived therapeutic benefits are.
7. Long-term follow-up: to share experience and advice, contact support groups and chat rooms, campaign about the condition, make anonymous enquiries.

The relationship between the internet and the health practitioner

Clearly, there’s no getting past the convenience and flexibility of the internet for people to access health information and this is likely to become even more commonplace. There’s no delay or wait for an appointment to start seeking answers to health-related questions. And people are using ‘the net’ for this and other aspects of their lives. In a similar way, we no longer need to pay our bills in person or even by post; we can do our banking online and even book our holidays without going anywhere near a travel agent.

What, then, is the role of the health practitioner in this age of ‘armchair information’? Despite accessing web-based information from home, most people still prefer to get definitive advice from their health practitioner. But they would like to supplement it with other resources and would appreciate their doctor pointing them towards reliable internet resources. The consultation of the future is likely to take on a very different shape as a result of this. Practitioners will increasingly suggest to patients that they refer to particular resources and consider their options before returning to discuss further. This gives people time to reflect on good quality information and discuss it with their family and friends if desired. As practitioners increasingly practise evidence-based healthcare the involvement of patients in the decision-making process becomes much more of a partnership, and guiding patients towards good quality information sources is an important part of their role.

Looking for good quality health information on the internet

The UK Department of Health has stressed the importance of access to good quality information in the White Paper Better Information, Better Choices, Better Health – Putting information at the centre of health (December 2004).

Over the past decade several tools have been developed to try to rate the quality of health information on websites, but most of them have not been very useful and have been discontinued. Recently, the British Medical Association (BMA) has suggested that there are six broad issues that should be considered when looking at a health information website. A similar list has been developed by the Australian Government’s Health Insite and the US National Institutes for Health.

Government websites for reliable health information

A number of government initiatives have been set up to provide consumers with good quality health information. In the UK, the National Library for Health has several patient resources that are reliable and useful: www.library.nhs.uk/forpatients

1. NHS Direct has been established to provide 24-hour e-health and telephone support to consumers to enable them to make decisions about their healthcare and that of their families. It includes a health encyclopaedia, answers to common health questions, self-help guides, a health magazine, enquiry facilities and information about finding a health service.
2. Best Treatments (produced by BMJ Publishers and free to UK residents), contains plain language summaries of randomised controlled trials and systematic reviews of treatments.
3. DiPEx is a database of patient experiences that we discuss further in Chapter 13.
4. Patient.co.uk contains free health information for common general practice problems.

The US National Library of Medicine has an extensive database of good quality information about over 700 diseases and conditions. Medline Plus (http://medlineplus.gov) also includes help with searching the internet for health information and lists of hospitals and physicians in the USA. It has extensive information about prescription and non-prescription drugs, health information from the media and also links to clinical trials.

The Australian Government has established Health Insite (www.healthinsite.gov.au) a consumer health information website that includes only content that meets certain assessment criteria and standards.

Making sense of health stories in the media

Medical breakthroughs make great headlines. Each week, news outlets report on research published in journals or promoted by researchers, companies or other agencies. However, these headlines should not be taken at face value. The consistent message of this book is that you should always question the level of evidence that lies behind the catchy headlines.

Here’s a good example. In October 2006, the American Journal of Medicine published a study that reported an association between regular fruit juice consumption and a reduced chance of developing Alzheimer’s disease. Headlines read ‘Drinking juice may slash Alzheimer’s risk’, ‘Drinking juice might stall Alzheimer’s’ and ‘Juices may cut Alzheimer’s risk’, claiming that the study had produced ‘powerful results’ that ‘the risk was 76 per cent lower for those who drank juice more then three times a week compared with those who drank it less than once a week’.

However, what is not explained by the media is that this study was a cohort design and, as discussed earlier in this book, such a design is prone to bias. It may be that people who drink juice more than three times per week are in better health generally, exercise more, and have higher education levels and better diets. What we would really need to do to answer this question is randomise people to high and lower fruit juice consumption for a period of perhaps 10 years (as this was the timeframe for the other study). It may be that we find through this process that increased fruit juice consumption actually has the opposite effect and increases the chance of Alzheimer’s disease.

Apart from study design it is important to look at the actual (or absolute) numbers of people affected by a treatment or behaviour change. When the original article is considered, there is a very strange pattern in the results. The number of people probably free of Alzheimer’s disease is greater in people who drink juice less than weekly (compared with once or twice a week). The number free of Alzheimer’s disease drops to 16 per 100 with one to two juices per week and then increases to 49 per 100 with three or more juices per week. It is very difficult to explain why the Alzheimer’s disease risk doesn’t consistently fall with greater juice consumption. This is called a dose–response relationship and is another thing to consider when looking for a cause-and-effect relationship.

A similar example comes from a media report that ‘decaffeinated coffee may cause heart problems’. When you look more closely at this story, the study was not a randomised trial and was prone to bias. You may want to change from drinking decaffeinated coffee to the standard variety, but it should not be done on the basis of changing your heart disease risk.

As we are bombarded with new health headlines in the media each day, it can be difficult to know how to make sense of them all. There are two common pitfalls in media reporting of research. One is that they overstate the validity of results from studies that are not randomised controlled trials and therefore prone to bias. Second, they often report effects in relative terms rather than absolute. A 20 per cent reduction in something that is very common will have a greater impact than a 20 per cent reduction in a rare event. For example, if a disease is fairly common (for example, the common cold) you might estimate that 80 out of 100 people in the community will get one over winter. A treatment that reduces your chance of getting the common cold by 20 per cent will mean that only 64 people out of 100 will get ‘a cold’ if they all take the treatment. On the other hand, if the treatment is less common (for example, for heart attacks) we might estimate that 5 out of 100 people might have a heart attack over the next 10 years. If a treatment reduces the chance of having a heart attack by 20 per cent then only 4 people out of 100 will have one.