RESOURCES: 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
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 sites.
Health On the Net Foundation provides tools to assess reliability and quality of any website - find out more on YouTube here.
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 site 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
Look for sites displaying these badges: HONcode (global) or HealthDirect Australia are just two. Kidney Health Australia is a health partner of these gateway sites. Each organisation has independently assessed our site and its content and endorsed Kidney Health Australia as a provider of high quality health information. Both organisations offer consumers advice on how to search for trustworthy evidence based health information. See our site certification badge which indicates our site complies with HON Code Standards for trustworthy health information: verify here>
Australian gateway sites and search engines
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 - reliable gateway to 'safe' health information as content is provided through information partnerships which ensure these organisations provide only quality information
. Kidney Health Australia is a proud approved health partner of HealthDirect Australia
Better Health Channel
Kidney Health Australia also partners with this gateway site based in Victoria - which provides 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.
Kidney Health Australia's website authorship
Kidney Health Australia Resources 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.
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 our health education sites: www.kidney.org.au * www.homedialysis.org.au * www.kidneycancer.org.au.
Who is responsible for the site?
Our red ‘K’ is our branding icon and is clearly visible on each page. The home page should clearly identify who owns the site 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 site?
Any reputable site 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 site created? Was it to provide health information or promote a product or natural therapy?
If one brand stands out in site 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 site updated regularly? Make sure the information reflects the most current thinking and scientific findings available.
Sites asking for your personal details must explain what they will use them for. You should read the Privacy Statement on a 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 sites offering facts you need, copy the information to a Word document or print the pages - note the address or url of the site 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 sites in your web favourites. Most browsers print the url and date of printing - there's no guarantee a few weeks later the information will still be there as Information on the web can change daily.
Hint - use calendar reminders so you never miss an appointment or forget to renew a prescription! Also note these dates in your main 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 sites 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 external resources are a valuable tool for your research, as each site is reviewed and identified a credible source of information. Our Recommended weblinks extend the kidney health information we offer, as no one site fits all needs.
KHA presents reviewed external weblinks to offer in these 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 date. 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 page link 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 - American site offering fact sheets in a health encyclopaedia on common conditions - also useful source of illustrations for students or expert patients.
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 sites 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
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 often set out the latest medical news in your field of interest.
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.
Social networking online
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.
INTERNAL SOCIAL NETWORKING
Register here - onsite social media spaces - LOGIN top left of home page
OUR SISTER SITES
EXTERNAL SOCIAL NETWORKING AREAS
KidneyEd TV Playlists on YouTube - KidneyHealthAus
Our health team have reviewed (to ensure quality education) YouTube videos produced specifically to educate on health topics. Videos are grouped in playlists - animations and videos e.g. Kidney & urinary systems - others on kidneys, kidney failure, dialysis, transplants and organ donation.
Can online support groups or social networking sites make you healthier?
In the interactive world of online communities, health support groups have created an important place in many people's lives. Refer to: ABC Health and Wellbeing - The health benefits of social networking>
Support Groups, Message Boards - for our kidney community
Page updated 27 May 2014