4/29/2014

Finding Information When There's Not Much Out There

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Written By Aileen Trang

Information can be powerful when we get it at the right time and in the right way. It can help us make better decisions and calm our fears or anxieties. I often hear patients say they feel better after getting information they needed in the Princess Margaret Patient & Family Library. They leave looking a little lighter and often with a smile.

But what can you do if there isn’t much information around? Maybe you’re looking for information on a new treatment or a condition that’s pretty rare. It’s easy to feel alone, left out, or frustrated when you can’t find the information you need. Here are some ideas on what you can do:

Start with your health care team

Your health care team’s training and experience makes them the best place to start. They may know the answers you are looking for. They may also know about pamphlets, websites, or other places you can go to find the information you need. Your doctor may even refer you to another doctor who has more experience treating people with your condition. Be sure to write down any information your health care team gives you so you can read it over later, or ask a friend or family member to help you take notes during your appointment. 

Visit the patient library at your hospital or treatment centre

Many hospitals have patient libraries that carry health and wellness information related to the conditions they treat. The library staff can help look for books, pamphlets, DVDs, or other materials on the topic you’re looking for. The library may not have materials on uncommon or new topics, but the library staff can usually help you find credible and up-to-date information on the Internet. Oftentimes, you can even ask for scientific research articles if you are comfortable reading them. You can also go back to the library for more help as your information needs get more specific.

Search the internet… carefully

You may prefer searching for information online yourself. The internet is full of information, but keep in mind that some of it is misinformation. Think carefully about information and question where it is coming from, and use How to Review the Health Information You Find on the Web (PDF) pamphlet as a guide. Follow up on the information you find with your doctor or nurse and ask them to clarify on anything that’s confusing or unclear.

Find other people like you

I’ve heard from some patients in the library that learning from other people who have gone through the same thing is one of the most helpful tips. It can be much easier to find your way when you can share experiences, tips and contacts with someone else who has gone through the same thing. You get the added bonus of emotional support too. Find existing groups by searching through website forums, Facebook, Google+ pages, or Twitter. If you’re still having trouble finding a connection, post messages so people know you’re looking. You might get referred.

 

The truth is we don’t have resources for everything – yet! But health professionals are constantly learning new things about cancer, other conditions, and new treatments, which will eventually lead to new resources. When there isn’t much information available, it’s really important for you to take charge and explore. So gather your family and friends to help and start your investigation.