FACT SHEET: Using the internet to research kidney health information
How do I find quality evidence-based kidney health information?
Firstly, confirm the information you find is evidence-based - not based on theory, but on scientifically proven published research. The material the website's parent organisation has 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.
Our website complies with HONcode standard for trustworthy health information, verify here
Kidney Health Australia is also an approved health partner of HealthInsite
Look for websites displaying these badges: HONcode (global) or HealthInsite (in Australia).
Kidney Health Australia is a health partner of these gateway sites. Each organisation has independently assessed our website and endorsed that Kidney Health Australia offers only high quality health information. Both organisations offer consumers advice on how to search for trustworthy evidence based health information.
Badges of ethics, values and authenticity
If you can't see a badge of ethics, follow the principles set out by HONcode to verify high quality websites.
Health On the Net Foundation provides tools to assess reliability and quality of a website - on YouTube.
Authoritative - qualifications of authors of the health information
Complementary - information should complement and not replace the doctor-patient relationship
- Privacy Statement
sets out policy for personal information submitted by site visitors
Attribution - source of the health information provided and dates of publication
Currency - date the page was updated - a good website is updated regularly
Justifiability - justifications for claims of benefits and disadvantages of products, treatments or services
- contact details for Web Manager
and the organisation
Mission, Vision, Values - clearly sets out the mission and target audience of the site
Financial disclosure - sources of funding of the organisation
Partnership and advertising policy
- clear separation between advertising and editorial content
Kidney Health Australia's Website Authorship
For details about kidney health information resources and authorship, refer Legal and Copyright. Our health education resources are evidence-based and referenced and form the base of education for: www.kidney.org.au * www.homedialysis.org.au * www.kidneycancer.org.au. Kidney Health Australia Fact Sheets are updated as new research becomes available and are reviewed annually. All material we publish presents references to support the content. Most health information is written using easy to understand simple wording.
Australian gateway sites
These search engines link to information provided by approved health partners and each partner usually displays a logo, as we do, to identify them e.g. Kidney Health Australia is a proud long-time health partner of:
Australian Government initiative - a reliable gateway to 'safe' health information as content is provided through information partnerships which ensures these organisations provide only quality information.
Better Health Channel
Information developed in consultation with experts from a wide range of reputable Australian health and medical organisations. Content partners provide valuable expertise, help ensure information is accurate, reliable and reflects latest in prevention advice, research findings and clinical recommendations.
Who is responsible for the website?
Our red ‘K’ is our branding icon and is clearly visible on each page. The home page should clearly identify who owns the website and identify its mission and goals e.g. Who We Are. The Contact Us details should clearly set out location and contact details of the parent organisation.
How can users interact with editors of the website?
Any reputable website should offer contact details of the organisation and contact with the Web Manager and you should expect a prompt reply.
Who pays for the website?
Web addresses that end in ‘gov’ are hosted by Federal or State Government; ‘org’ is used by non-commercial organisations and ‘com’ usually means a commercial business. 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 or natural therapy?
If one brand stands out in 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 ensure the information has no bias toward an individual, organisation, brand or therapy.
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.
Websites asking for your personal details must explain what they will use them for. You should read a Privacy Statement on the site you visit, to ensure 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 IS AN EXPERT PATIENT?
Many patients become 'experts' as they have to learn a set of life skills to cope with and manage their life. Many GPs who care for people with chronic conditions say patients understand their condition better than they do.
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
Your personal medical journal
If you find several websites offering facts you need, copy the information to a Word document or print the pages - note the address or url of the website and date each entry. A journal 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. Bookmark any useful websites in your web favourites. Most web browsers print the url and date of printing. Information on the web can change daily - there's no guarantee a few weeks later the information will still be there.
Hint - use your mobile phone or PC calendar reminders, so you never miss an appointment or forget to renew a prescription! Also note these dates in your health history file.
Take charge of your information
Centralise your medical information in one place to access it easily and quickly - this is valued background detail as it is accurate and can be used by health professionals, your family, or in an emergency. This journal should include your personal records, prescription details, any traditional and complementary treatment used, dates and details of any surgery, assessment reports. It can even record details of optical, physio or dental appointments and immunisations.
Hint - It may include the health history of other family members and creates a health archive for use by your children in the future, for their medical history. Attach any test results, X-ray 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
These collections of links to internal or external resources are a valuable tool for your research, as each are reviewed and we have identified the website as credible. Our Recommended weblinks are offered to extend the kidney health information we offer, as no one website fits all needs.
KHA presents a range of reviewed 'Recommended Weblinks' in sections:
For Patients - Nutrition and CKD - Health Professionals - Organ donation.- Youth links
Type in a few words into Google and you will be presented with link choices in seconds. But you should use your search engine to narrow your search results. Search for local links first, then global. Do this by refining your search query - add Australia to your search words and add current year date e.g. 2012. Be specific in search terms to reduce 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.
Search words and phrases
Type a word or phrase into the search box at the top of the screen. If you are not getting relevant results, think of other words or phrases to 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 (register to use) but some information is open access. It is helpful to know a doctor's initials as this will target results. 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.
If you find words you don't understand look for a glossary on site - which is a mini dictionary which gives a simple explanation of relevant medical terms used.
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.
WEB 2.0 - ONLINE HEALTH TOOLS AND SOCIAL NETWORKING
The development of online health tools and social networking heralds a breakthrough which can empower healthcare consumers, especially those suffering from chronic illness.
Blogs and Forums (e.g. Kidney Blog and YAP Forum)
Many bloggers focus on health and tell their personal story about their struggle with a disease or condition. There are many health blogs on the web. It is amazing how therapeutic it is to share your experience with friends and family, but especially chatting to others with similar issues.You are not alone! Health professionals also blog about their specialty and latest medical news.
Kidney Health Australia - Social Netiquette Guidelines
These guidelines apply to all online networking areas managed by Kidney Health Australia, both onsite and external areas. Posts may be moderated if they do not meet these Guidelines.
These areas provide users from our kidney community with an opportunity to gain emotional support, share experiences with others with a similar lifestyle and chronic health conditions.
YAP Space for registered users only
Our Health Team and National Consumer Council review all postings in YAP Space
- personal email or contact details can not be displayed in YAP Forum. REGISTER HERE - to use YAP Space
includes YAP Chat
and YAP Forum
- our secure social networking areas for registered users only. Here you can communicate online with others from our Kidney Community by either posting in the Forum or by entering our chatrooms.
KidneyEd TV Playlists - Our health team review (ensuring quality content) educational YouTube videos and are presented in various playlists. View educational animations and videos produced specifically to educate - try Kidney and urinary systems in the body to start. Anyone who wants to learn more about their kidneys will discover masses of information on topics from good kidney health - all the way to kidney failure, dialysis, transplantation and organ donation.
Can online support groups or social networking sites make you healthier?
Amongst the interactive world of online communities, health support groups have created an important place in many people's lives. Refer: ABC Health and Wellbeing - The health benefits of social networking. You can find many online 'communities' for patients with chronic disease to share experiences.
SOCIAL NETWORKING EXTERNAL WEBSITES
UPDATED 15 MAY 2013