USING THE INTERNET TO RESEARCH KIDNEY HEALTH INFORMATION
Those concerned with health use the web to search for information about symptoms, diseases, conditions and latest treatment. Yet research confirms the quality of health information on the web varies in quality. Meeting any code of practice on the web is voluntary as no rules control the quality of health or other information on websites, so some may promote untested products and therapies. Be a smart surfer for online health information - rely on common sense with what you read on the web.
Is the information you find evidence-based?
As a health consumer you should confirm the information you find is evidence-based - not based on theory, but on scientifically proven published research. Websites and material published (fact sheets, health publications etc) should state the source of their claims and information provided. Avoid sites that cannot prove their claims.
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.
Always discuss health concerns and any web information you find with your doctor.
This site complies with HONcode standard for trustworthy health information: verify here.
If a website displays the HONcode badge as set out above (global) or the HealthInsite logo (Australia), their information also advises on how to search for trustworthy evidence based health information.et calendar reminders or texts, so you never miss an appointment or forget to renew a prescription! Also note the dates in your health history file.
Website Authorship
For details about our kidney health information resources and authorship, refer to Legal and Copyright. Our health education resources are evidence-based and referenced and form the base of education information for our websites: www.kidney.org.au and www.kidneycancer.org.au
Kidney Health Australia Fact Sheets are updated as new research becomes available and have major reviews every two years. Most health information is written in simple 'lay' language that is easy to understand. However, you may find a word or two which you don't understand. Look for a medical glossary or mini dictionary on sites you visit which gives a simple explanation of medical terms used.
Become an 'expert patient'
Many GPs who care for people with chronic conditions say patients understand their condition better than they do. Many patients become 'experts' as they have to learn a set of life skills to cope with and manage their life. Increasing evidence shows that with proper support people with a chronic condition can take the lead in managing their health. This improves their quality of life, their overall mental and physical health and reduces incapacity. An expert patient is a person who:
- feels confident and in control of their life
- aims to manage their condition and its treatment in partnership with health care professionals
- communicates effectively with health professionals and wish to share responsibility on treatment choices
- makes the best use of resources available to them
- sources and finds evidence-based education resources to educate themselves on their condition
- are realistic about the impact of their disease on themselves and their family
- use their skills and knowledge to lead full lives
WHAT MAKES A GOOD WEBSITE?
Who is responsible for the website?
The home page should identify the organisation who owns the website and offer information on Who We Are and it sets out our aims and mission. Next, verify the Contact Us details listing an organisation's full address and contact information. Our red ‘K’ is our branding icon and is clearly visible on each page.
How can users interact with editors of the website?
On any reputable website you should be able to contact a web manager or editor and expect a prompt reply. In your email note queries or any problems found - email the Webmaster. You should also be able to phone the organisation and speak with an individual responsible for the information posted.
Is the content balanced?
A balanced website provides a wide-ranging account of all information available on the subject 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 major publications?
Always look at who has provided the information. On Fact Sheets, publications and reports, you should be able to find the author’s name, their qualifications and the Institute where they were obtained. If no author is listed, look for the organisation which created the website and check that they are reputable.
Who pays for the website?
Web addresses that end in ‘gov’ are hosted by federal or state governments; ‘org’ is used by non-commercial organisations and ‘com’ usually means a commercial business. Any source of funding can influence the content of a website. Kidney Health Australia www.kidney.org.au is a not-for-profit benevolent organisation.
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 the date the information was posted. Is the website updated regularly? Make sure the information reflects the most current thinking and scientific findings available.
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.
When should alarm bells ring when viewing a site?
- Does the site use only case histories or personal testimonies as proof?
- 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 to have a cure for a condition?
- Does the site promote self-diagnosis and self-prescription?
HOW TO FIND THE HEALTH INFORMATION YOU NEED
The Internet has made searching for health information easier. As outlined above, follow this criteria to ensure it is a credible site for your needs.
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
These collections of links are a valuable resource from a website you've identified as credible. A collection of Recommended weblinks have been researched and verified and usally present both internal and external links. They provide easy access to extended health information which will save you time and energy.
KHA presents a range of reviewed 'Recommended Weblinks' in sections - For Patients - Nutrition and CKD - Health Professionals - Organ donation.and Youth links
Search Engines
Type in a few words into a search engine (Google or Yahoo) and youwill find many web pages in seconds. But you should use your search engine to narrow your search results. Search for local information first, then global. Do this by refining your search query - add Australia to the words in your search box and add current year date e.g. 2011. Be specific in search terms to reduce the number of pages offered to improve the quality found.
Hint - If you want to know about "kidney disease in children" - type these words into a search box and use quotation marks. Pages appearing first in a list might not be the most relevant. Organisations can pay to have web page appear high in results lists and are usually shown as sponsored links. Using search engines gets easier with time as you understand how they work. They are useful for finding health information on the net, but smarter ways are outlined below.
Australian gateway sites contains links to other pages - a directory of websites.
Australian Indigenous HealthInfoNet 'One-stop info-shop' contributes to 'closing the gap' by informing practice and policy, by making research and other knowledge accessible. Note these sections: Kidney Health * Programs and Projects * Kidney Disease in plain language.
HealthInsite Government funded and reliable gateway - a 'safe' place to find health information as content is provided through information partnerships which ensure organisations provide only quality information. Websites are assessed by a highly qualified Editorial Board. Organisations who are approved partners usually display the logo as we do (Kidney Health Australia is a proud long-time health partner).
Search words and phrases
Firstly type a word or phrase into the search box at the top of the screen. If you seem to be getting irrelevant results, think of other words or phrases you could use. 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. Remember if you use a doctor's initials, type them like this "Smith J".
Medline Plus is an American website offering thousands of fact sheets in the health encyclopaedia section, mainly covering common conditions. It is also a useful source of illustrations.
Wikis
These collaborative editing websites allow visitors to contribute and edit content. In professional wikis e.g. www.wikikidney.org all contributing health professionals must apply to be an editor and offer valid credentials which are checked fully before approval. Health facilities and health systems have a role to play by building and supplementing consumer-friendly Wikis.
Your personal medical journal
If you find several websites offering facts you need, copy the information to a Word document - note the address or url of the website your research is taken from and date each entry. A journal of information is a handy reference tool for the future when you need to explain to family and friends about your health condition, or refresh your mind about facts. Ensure you bookmark the good website in folders in your web favourites. Most web browsers print the url and date of printing. Information on the Internet can change daily - there's no guarantee a few weeks later the information will still be there.
Take charge of your information
Centralise your medical information in one place to access it easily and quickly, when you need to give information to health professionals, family, or in an emergency. This includes your personal records relating to use of traditional and complementary treatment, surgery, assessment reports, optical, dental and immunisations. It can also include a detailed health history of other family members which also creates a health archive for use by your children in the future for their medical history. Attach test, xray and ultrasound reports.
When you find credible websites and relevant facts - what next?
Talk to your doctor about the information you found. Use your research to write a list of questions you may have.
WEB 2.0 - ONLINE HEALTH TOOLS AND SOCIAL NETWORKING
The development of online health tools and social networking heralds a breakthrough to empower healthcare consumers, especially those suffering from chronic illness.
Blogs and Forums (e.g. Kidney Blog and YAP Forum)
Many bloggers now focus on health and tell their personal story about their struggle with a particular disease or condition, sharing experiences with friends, family and others with similar issues. Health professionals blog about their speciality and medical news. These tools or resources can serve our kidney health community well, by creating a monitored personal journal.
Online chat communities
YAP Space includes YAP Chat - our social networking areas. Register to use YAP Space areas.hat to others with a similar interest.
Terms of Reference
When using a blogosphere, chatroom or forum, creating threads or answering them, first refer to the terms of reference and code of conduct (e.g. YAP Space for its YAP Chat and YAP Forum). Note if the chatroom is ‘moderated’ or controlled, and if so, by whom and why. Read chat before entering a 'room' as this can help you decide if you feel comfortable joining in.
Can online support groups or social networking sites make you healthier?
Among the interactive world of online communities, health support groups have taken an important place in many people's lives. Refer to ABC Health and Wellbeing - The health benefits of social networking. You can find various online 'communities' for patients with chronic disease, to share their experiences.
Our Facebook profile www.facebook.com/pages/KIDNEY-HEALTH-AUSTRALIA/159717913612
Come join the fun - find out what Kidney Health Australia is doing in your kidney community!
KidneyHealthAus www.youtube.com/user/KidneyHealthAus
KidneyEd TV Playlists
Our health team review (to ensure high quality content) and select education YouTube videos, then group them in playlists. View awesome educational animations and videos produced specifically to educate - initially try Kidney and urinary systems in the body. Several playlists are available in our range, and are of interest to anyone who wants to learn more about their kidneys and chronic kidney disease, various treatments etc. all the way through to transplantation and organ donation.
Support Groups, Message Boards and social networking
Refer to For Patients section - Recommended Weblinks for more links to our kidney community online
UPDATED 24 NOVEMBER 2011