Using the web

Using the internet to research kidney health information

The World Wide Web is an effective means of researching all kinds of information, from family trees to travel plans. Those concerned with their health use the Internet to search for health related information and about various diseases and conditions. Yet studies continue to confirm the variable quality of health information available.

It is important to be aware that there are no rules controlling the quality of health information that appears on websites. Remember that meeting any code of practice on the Internet is voluntary only. Sometimes individuals or organisations create websites to promote their own interests. As a rule, always look for websites that stick closely to evidence-based information. As a health consumer, you must rely on common sense, sound judgment and some guidelines to help evaluate the quality of information found on web sites.

What makes a good website?

There are a number of things that can help you to decide on the content quality. Consider these suggestions:

Who is responsible for the website? This should be easy to identify as is often on the ‘home’ page. For example on our Kidney Health Australia site our red ‘K’ - our very clear branding icon - is clearly visible on each page.

Who pays for the website? Web addresses that end in ‘gov’ are hosted by federal or state governments; ‘org’ is often used by non-commercial organisations and ‘com’ usually means a commercial business. The source of funding can influence the content of the website. Kidney Health Australia www.kidney.org.au is an Australian not-for-profit organisation.

Is the information evidence-based? It is important that the health information you refer to is evidence-based. This means it is not based on theory but on scientifically proven, good quality, published research. Websites should state the source of their claims and information provided. Good quality information is found in academic or professional journals. Avoid sites that cannot prove their claims with more than personal experiences or unclear sources.

Is the content balanced? A balanced website provides a good overall account of all information available connected with your topic of interest. Some sites only provide information that stresses one point of view and unusual or unrelated information. These sites should be viewed with caution and further research into supposed ‘facts’ should be made to confirm their claims.

Is the author's name and qualifications given on publications? Always look at who has provided the information. The author’s name, qualifications and the institute where they were obtained should be listed. If no author is listed, look for the organisation which created the website and check they are reputable. Generally the Who We Are? or ‘What We Do? pages states the aims of the host organisation. You should also be able to verify the Contact Us details, listing the organisation's address and other contact information.

Is there any conflict of interest? Why was the website created? Was it to provide health information or promote a product? If one brand stands out in the website content, then it may not be from a balanced source. Is there advice about who should not use a product? Always conduct more research, particularly when investigating treatment options to make sure the information has no favouritism toward any individual, organisation or brand.

Health and medical information often changes. Check to find out the date the information was posted. How old is it? Is the website updated regularly? Check when it was last updated. Make sure the information reflects the most current thinking and scientific findings available. Kidney Health Australia Fact Sheets are updated as new research becomes available and have major reviews every two years.

Is there a privacy policy? Websites asking for your personal details needs to explain what they will use them for. Read the website’s Privacy Statement to make sure that any information you supply will be kept confidential, not sold to a third party and that ongoing communications from the site will only be sent at your request.

What does that word mean? Most health information provided for patients is in simple 'lay' language that is easy to understand. However you may find a word or two which you don't clearly understand. Look for a medical glossary or mini dictionary on the site you are visiting which give you a simple explanation of medical terms used.

When should alarm bells ring when viewing a site? You can use this a checklist for spotting unproven health information:

Does the site use only case histories or personal testimonies as proof?
Does the site use only one study as proof?
Is the treatment based on a ‘secret formula’?
Does the treatment claim to work for everyone with that condition?
Does the treatment claim to work immediately and permanently with no medical intervention required?
Is the treatment available from only one source, e.g. over the Internet?
Does the site claim information about their treatment is being unfairly attacked by medical professionals?
Does the site claim to have a cure for a condition?
Does the site promote self-diagnosis and self-prescription?

Which websites are reliable? Highly regarded organisations or institutions that can be relied upon to provide accurate, up-to-date and unbiased health information create certain sites.

HealthInsite is a reliable Australian gateway website which provides Australians with a 'safe' place to find health information. Content is provided through information partnerships established between HealthInsite and selected organisations (Kidney Health Australia is a long time partner) providing quality information on their websites.

Organisations and websites whose content has been proposed for access through HealthInsite must go through the process for Assessment of Content for HealthInsite and be approved by a highly qualified Editorial Board. Organisations who are approved partners usually display the HealthInsite

Health on the Net (HON) promotes useful and reliable online medical and health information and its appropriate and efficient use.

DISCERN provides users with a valid and reliable way of assessing the quality of written information on treatment choices for a health problem.

The medical advice on Kidney Health Australia's website has been prepared by a team of trained health education professionals and checked for accuracy and relevance by leading Australian experts.

How can users interact with the producers of the website? You should be able to contact a website host noting any queries of problems found - email the Web Manager with your feedback and questions.

Hints on how to find the health information you need

The Internet has made searching for health information easier. Rather than visiting your local library to search textbooks often written using complex medical terminology which is difficult to understand. You can just type in a few words in your web query, and hundreds of web pages are offered. As outlined above, carefully look at the website and follow this criteria.

Hint - Healthcare in other countries may be organised in different ways to Australia. Some treatments suggested may not be approved for use here, and conditions or medicines can have different names in different countries.

Recommended Weblinks. A great resource from any health website you've identified as credible are their list of Recommended Weblinks. The website's health team present these sites to provide extended health information on the topic you are researching. This will save you a lot of time and energy. Ask your doctor to some recommend sites as most doctors keep up to date with websites in their specialist area. They may even be involved in producing one.

Search Engines. Type in a few words into a search engine, such as Google or Yahoo, gives hundr\eds of web pages in seconds. However, there are ways of using a search engine that save you reading hundreds of pages to find the precise facts you need.

In most cases, you can specify on your search page whether you want to search all of the Internet or just local pages. Another way of doing this is to add Australia to the words you type in the search box. To ensure it is the latest information, type in a year date e.g. 2008. Be specific in your search criteria to reduce the number of pages that come back to improve the quality found.

Hint - If you want to know about "kidney disease in children" - type these words into the search box and use quotation marks as diplayed, rather than just kidney disease. Using quotation marks to search for two or more words linked together in a term "chronic kidney disease" can also help you find information you want. Rather than a million hits, you will find what you really are looking for. Pages appearing first in a list of results might not be the most relevant. Organisations can pay to have their web page appear high in results lists and are usually shown as sponsored links. Using search engines gets easier with time as you get to know how they work. They are a useful tool for finding health information on the net, but smarter ways are outlined below.

Gateway sites. A gateway site contains links to other pages - a directory of websites.

HealthInsite is a reliable Australian gateway website - as all of their pages are indexed and checked against a series of criteria, to ensure information is reliable, unbiased and up to date.

Family Village University of Wisconsin is an American gateway website which indexes information from other countries. The library section is arranged alphabetically and covers lots of diseases and conditions. Under each entry, you can find chat rooms and support groups, as well as information resources. However, as this site is American, check where the information comes from, as various things may differ between Australia, the USA and indeed the rest of the world.

Medical Journals. Sometimes, you might want to find articles written about your area of interest that are published in medical journals. This can be helpful if you are researching a rare condition or new treatment.

Hint - There are various medical databases available. Two often used sources are PubMed (which includes links to full text published articles and other related resources) and Medscape (which features peer-reviewed original medical journal articles - registration required). These sites were designed to be searched by doctors and scientists, rather than lay people, so you might have to think around the subject to find the keywords to use in your search. Remember, often 'unusual' cases are published in medical journals, rather than 'normal'. This can give you a distorted view of a condition so bear this in mind when searching.

Your search words and phrases. The first step is to type a word or phrase into the search box at the top of the screen. If you seem to be getting irrelevant results or none at all, think about other words or phrases you could use. You can also search for a particular author e.g. if you want to find out what your doctor has published, you can search by name in PubMed. It is helpful to know your doctor's initials as this will limit results that come back. Remember if you are using a doctor's initials to type them in like this "Smith J".

Once you get the results of your search, you can look at the references to the articles. The reference is the information you need to be able to find the full article in a journal. If you click on author link or abstract button to the left, you can see the full reference and often a summary, called an abstract. Some articles are free - shown as 'full text' is available. There is often a button on the page about viewing the complete article. However many journals on PubMed require a subscription or other payment to view the article. If articles do not offer 'full text', you can order them through your local library. You need to note the complete reference, including names of authors, title of the article, journal name, volume, issue and page numbers. This Library service may not be free either, but the article can usually be sourced quickly.

Medline Plus is an American site offering thousands of fact sheets in the health encyclopaedia section, mainly covering common conditions. It is also a useful source of illustrations.

Making the most of the information you find

It's easy to find lots of credible websites and relevant facts about your health condition, but what next? Talk to your doctor about the information you found. Be wary of taking packs of info to an appointment. This can be very off-putting for some doctors. It might be less intimidating if you use the facts you find to put together a list of questions to ask your doctor.

Your personal medical journal. If you have found several websites offering relevant facts, copy the information from the site to a Word document - note the address or url of the website your research is taken from and date each entry. This is a handy reference tool for the future when you want to explain to family and friends about your health condition, or refresh your mind on a particular detail. Use this information to prepare questions for your doctor or health professional.

If you prefer to print off the web pages as presented, ensure you bookmark the website in folders, in your Web Favourites. Most web browsers can be set up to print the web address of pages you print. Note the date as info on the Internet can change daily - there's no guarantee a few weeks later the same information will still be there.

You take charge of your information, centralise it in one place, access it when you need it and make it available to health professionals, family members or close friends as you choose, or in an emergency. This includes your personal records relating to use of traditional and complementary treatments, optical, dental and immunisations. It can also include the health history of other family members which will build a family health archive for use by your children in the future. It is easy to attach, or have your health professionals attach, important information such as reports, test results and scans. You can even schedule SMS text reminders so that you'll never miss an appointment or forget to renew a prescription again!

Wikis. Allow visitors to contribute and edit content - collaboration with a high level of peer review. In some instances any visitor can edit the site, but in professional wikis such as wikikidney.org all health professionals contributing must apply to become a contributor. Health facilities and health systems have a role to play by building and supplementing consumer-friendly Wikis (collaborative editing websites) such as Wikikidney which is edited and reviewed by health professionals from the global kidney community.

Should you require further information always consult your doctor or health professional.

Web 2.0 health - Online health tools and social networking

The development of "Web 2.0" heralds a breakthrough opportunity for empowering healthcare consumers, especially those suffering from different forms of chronic illness. It is anticipated that the most popular health-oriented Web 2.0 sites will ultimately be the ones carefully monitored by teams of expert clinicians.

Although a relative latecomer to the world of Web 2.0 - health care, it may be the ideal practical use for this new Internet functionality. Patients surfing the web need to sift through the noise of abundant health information, much of it inaccurate, then distill the elements that will help them manage their disease and navigate their local health system. This webpage was created to guide you to do this efficiently. Interesting reading Web 2.0 and chronic illness: new horizons, new opportunities Neil Seeman Healthcare Quarterly Vol 11 No 1 2008 www.electronichealthcare.net

Blogs and Forums. (e.g. Kidney Blog and YAP Forum) A growing number of bloggers are focusing on the topic of health. Patients blog about their struggle with a particular disease or condition, sharing their stories with friends, family and others with similar issues. An increasing number of health professionals blog about recent advances in health care, trying to make sense of the increasing amount of medical news and information available online. These tools or resources can serve the kidney health community well by creating a monitored personal journal area. This interaction ensures the creation of stronger community bonds while working to improve population health outcomes.

Online chat communities. YAP Space includes YAP Chat, primarily for the use of our Australian kidney community. You must be registered to use YAP Chat but you do not have to be an Australian. You may just want to chat to others with a similar interest in all things 'kidney'.

Kidney related health professionals or patient groups may book a private chatroom on our YAP Space by prior arrangement, enabling you to communicate with others in your group, in a moderated 'room'. Email your request to chatroom@kidney.org.au and a special room will be created and moderated by our staff. You must nominate a date and time, outline the nature of your group and reason for meeting.

Terms of Reference. If you are using a blogosphere, online chat room or discussion forum, creating threads or answering them, refer to the terms of reference and code of conduct for using the service (e.g. our YAP Space) which should be clearly defined. You may also want to find out if the chatroom is ‘moderated’ or controlled and if so, by whom and why. Read chat discussion before entering a 'room' as this can help you decide if you feel comfortable joining in.

Be a smart shopper for online health care information. Rely on common sense and evaluate carefully what you see on the web. The Internet is an ideal means of obtaining a range of information quickly but remember, always discuss your health concerns and the information you discover on the Internet with your doctor.

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Updated 3 February 2010