RESOURCES: Using the internet to research kidney health information
The internet is an effective means of researching all kinds of information. People concerned with health use the internet to search for information about various symptoms, diseases, conditions and treatments. However, not all the content on the internet is of high quality.
Be smart when looking at online health information. Rely on common sense and carefully evaluate what you read on the web. The internet can give you a range of information quickly, but always discuss health concerns and web information with your doctor.
WHAT MAKES A GOOD WEBSITE?
Meeting any ‘code of practice’ on the internet is voluntary. Sometimes individuals or organisations create websites to promote their own interests.
There are a number of things that can help you to decide on the content quality. DISCERN www.discern.org.uk provides users with a valid and reliable way of assessing the quality of written information on treatment choices for a health problem. Also consider the suggestions below.
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 based on scientifically proven, published research. Websites should state the source of their claims and information provided. 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 focuses on one point of view and provides a lot of 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?
Is there a way of interacting with editors of the site?
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.
How current is the information?
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.
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, will not be sold to a third party, and that ongoing communications from the site will only be sent at your request. KHA's Privacy Statement>
You should be able to contact a website host (Web Manager) to note any queries or problems found. Email the Web Manager with your feedback or questions and you should expect a prompt reply. Email KHA's Web Manager>
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.
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. KHA presents reviewed external weblinks in these sections: For Patients - Nutrition and CKD - Health Professionals - Organ donation - Youth links
Wikis are websites that allow visitors to contribute and edit content. This allows for collaboration with a high level of peer review. In some instances any visitor can edit the site, but in professional wikis such as Wikikidney www.wikikidney.org a suitably qualified health professional must apply to become a contributor. The information is then edited and reviewed by health professionals from the global kidney community.
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. There are various medical databases available. Two commonly used databases are PubMed and Medscape These sites were designed to be used by doctors and scientists, so you might have to think carefully about how to search and how to understand the results.
HINT: Remember, healthcare in other countries may be organised in different ways to Australia. Some treatments suggested may not be approved for use here in Australia, and conditions or medicines can have different names in different countries.
SIGNS OF UNRELIABLE INFORMATION
- Does the site use only case histories or personal testimonies as proof?
- Does the site use only one study 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?
- Does the site claim to have a cure for a condition?
- Does the site promote self-diagnosis and self-prescription?
WHERE DO I START?
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 our health education sites: www.kidney.org.au * www.homedialysis.org.au * www.kidneycancer.org.au.
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.
Australian gateway sites and search engines
There are a number of highly regarded health ‘gateway’ sites which contains links to other pages. These sites are government-hosted, and the content must go through a rigorous assessment and editorial process. Each organisation here has independently assessed this site and endorsed Kidney Health Australia as a provider of high quality health information.
- Health On Net - specialised search engine and directory helps you locate reliable sources and trustworthy health information. Kidney Health Australia is certified as meeting HON Code standards and criteria: verify here>
Badges of ethics, values and authenticity
If you can't see a badge of ethics on a site you visit, follow the principles set out by HONcode to verify high quality sites.
Health On the Net provides tools to assess reliability and quality of any website - see YouTube video.
Authoritative - qualifications of authors of the health information
Complementary - information should complement and not replace the doctor-patient relationship
Privacy - 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
Transparency - contact details for the 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
and advertising policy - clear separation between advertising and editorial content
WHEN YOU FIND A GOOD WEBSITE - WHAT NEXT?
Talk to your doctor about the information you found. Be wary of taking packs of printed information to an appointment as this can be overwhelming. A useful idea is to use the facts you find to put together a list of questions to ask your doctor.
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.
Create a 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.
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
A growing number of social media applications are focusing on the topic of health. A blog (a blend of the term web log) is a type of website. Blogs contain regular entries of commentary, descriptions of events, or other material such as graphics or video. Most blogs are interactive, allowing visitors to leave comments and even message each other. It is this interactivity that distinguishes them from other static websites.
An internet forum, or message board, is an online discussion site where people can hold conversations in the form of posted messages. Depending on the forum's settings, users can be anonymous or have to register with the forum and then subsequently log-in to post messages. On most forums, users do not have to log in to read existing messages.
Social networking areas like Facebook are also homes for various online support groups. Patients comment about their struggle with a particular disease or condition, sharing their stories with friends, family and others with similar issues.
Kidney Health Australia - Social Netiquette Guidelines apply to all online networking areas managed by Kidney Health Australia, both onsite and external. Posts may be moderated if they do not meet these Guidelines.
Register here for onsite social media spaces - LOGIN top left of home page
SUPPORT GROUPS, MESSAGE BOARDS - FOR OUR KIDNEY COMMUNITY
Page updated 12 November 2014