As a CLL patient, taking an active role in your healthcare can be a game-changer – and doing your own research is a powerful way to start. However, it’s essential to approach it in a thoughtful way, since inaccurate or out of date information can be harmful and cause needless worry.
CLL Canada’s CLL Information and Resource Centre is a good place to start, since it is composed of links from reliable websites that have been selected by patients for patients.
For those who want to go further afield, a recent article provides useful tips on the ins and outs of doing your own research, featuring expert insight from Dr. Brian Koffman of the CLL Society, among others:
- Begin by asking yourself what you want to know about your health and what you hope to achieve. This will help you focus your research and make the most of your time.
- Think about how much time and effort you want to put into researching – it’s okay to rely on your healthcare team for some things.
- Look for trustworthy sources such as medical research centres and non-profit organizations. These sources are more likely to provide accurate and unbiased information.
- Be careful of websites that are trying to sell you something or have biased information. These sites may not have your best interests at heart.
- Pay attention to important details, such as who was studied and who funded the research. This will help you evaluate the credibility of the research.
- See the full article for additional tips.
In addition to tips covered in the article, if you have doubts about information on a site new to you, you can cross reference it with a known and trusted one to see if it has similar CLL-related information. If there are significant differences, this could be a warning signal about the new site. Well known online CLL forums such as the ones listed in the CLL Canada Information and Resource Centre are also a good place to validate information, as there are many knowledgeable people who post there.
Remember, doing your own research takes time and patience so don’t get discouraged if you don’t find answers right away. Take your time and ask for help when you need it. And always make sure the information you’re using is up-to-date.
By doing your own research, you’ll be better equipped to make informed decisions about your health and to work as a partner with your healthcare team.