We know, you were told not to google your disease but let’s be honest you did it and if you’re lucky you got tons of results and maybe it was difficult to filter those. We believe searching online for your disease, especially after the diagnosis, should be done but with caution. For example, always make sure the information is updated, check the creation date or the date when the paper was published. Always go to the About/Contact/Who we are section. Some pages are very well disguised and you might think there’s a patient organisation behind it but in fact, it’s a pharmaceutical company. We know they probably did it with their best interest but it’s better to be transparent about this.
Going back to Google. Every day, the internet helps patients and families all over the world to learn more about their disease, to find support, to see they are not alone. The benefits are exceptional.
Some patients and caregivers have become real experts on Google search, sadly because they have sent long hours searching for information and support for their disease online.
From our side, we’ve been answering patients’ emails since RareConnect started in 2009. We try to do our best when answering these emails, always pointing out that we’re not medical experts and that we don’t offer any kind of medical advice. We’ve become quite good in finding information with the limited time that we have. Here are some of our basic tips in order to use google search efficiently.
We suggest to start big and then focus on more specific searches.
Start with the disease name and after that type…
- Country: Familial Mediterranean Fever United States (or the country you live in)
- Cities: Ehlers Danlos Barcelona
- Language: Alkaptonuria Español
- Organisation: Evans Syndrome organisation
- Association: Fibromuscular Dysplasia association
- Support group: Pulmonary Hypertension support group
- Foundation: Creutzfeldt Jakob Disease Foundation *This term is more common in the US than Europe.
If possible, try to do this search in different languages. Sometimes the only existing patient organisation is not from an English-speaking country. Orphanet gives you the name of the disease in 7 languages. Just switch the language of the page (top menu bar).
Try to search different names for the same disease. Some diseases have synonyms. Search for your disease on Orphanet and you’ll see a box with the synonyms and other information. See example below.
Keep it short
Exclude irrelevant words and avoid sentences.
Avoid searching for sentences like
What’s the treatment for XXX disease?
— Better use: XXX treatment
What causes XXX?
— Better use: XXX cause
What’s the prognosis of XXXX?
— Better use: XXX prognosis
Is XXXX hereditary?
— Better use: XXXX hereditary
What is the life expectancy of someone with XXX?
–Better use: XXXX life expectancy
Use some of the Google Search Operators
You can use symbols or words in your search to make your search results more precise.
They’re used in a search engine query to narrow the focus of the search.
See below our favourite operators
1- Use quotes to search for an exact phrase
This allows you to narrow the results. When using quotes, you’re telling google that you want to see an exact match, the exact words in that exact order without any change. See a couple of examples below:
“Neurodegeneration with Brain Iron Accumulation” – 50100 results
Neurodegeneration with Brain Iron Accumulation – 419,000 results
It’s also very useful for gene mutations:
22q11 deletion it’s not the same as 22q11 duplication. Even if it changes one number, the symptomatology could be completely different.
It’s also useful for diseases that have many different subtypes but you’re searching information for a specific form, like Epidermolysis Bullosa or Ehlers-Danlos.
2- Use the minus sign to eliminate results containing certain words
Example: Aortic dissection –aneurysm
(You won’t see results that include the word aneurysm)
Any word after – will be excluded from the search. Remember to always include a space before the – .
3- Search websites for keywords
Especially useful when you want to search for a term within a particular website. Google will only give you results published on this website.
multiple myeloma site:cancer.gov
Write the word or words you want to search first followed by one space and the operator site: then followed by the domain without the https://wwww. part
XXX XXX XXX site:XXXX.com
*Learn more about Google search operators here.
Use Google’s Advanced Search Page
If the search operators are too complicated, you can still perform sophisticated searches via the Advanced Search page.
You can access the Advanced Search page by clicking the Advanced Search link on Google’s homepage. This page contains a number of options you can use to fine-tune your searches. All you have to do is make the appropriate selections on the page, and Google does all the fine-tuning for you.
The three filters we use the most are:
Language: if we want to see results written in a specific language
— When I’m looking for websites only in French
Region: if we want to find pages published in a particular region
— When I only want to see results from Italy
File type: Limits the search to specific file types of files. We mostly use it for pdf
—When I’m looking for documents, guidelines, articles about my disease
–When I want to see results only from pages updated during the last year
Watch the tutorial: How to search effectively with Google
Search images using Google images
Ever come across a photo that looks strangely familiar? Or if you want to know where it came from? First, you save the image and then search it on Google Images (with the camera button), you’ll be able to see the same image or similar ones on the web.
Ctrl + F shortcut
Very useful for long pages when there’s a lot of text and you just want to know if your disease is mentioned. Click Ctrl and F at the same time and a small box will appear on the top right of the page. Type the term you’re looking for and you’ll see how many times it’s visible on that page exclusively (not the entire website though). Also works for word documents and pdf.
Google Scholar: Searches for articles and other scholarly information
Google Scholar is a freely accessible web search engine that allows users to search for digital or physical copies of articles, whether online or in libraries. It indexes full-text journal articles, technical reports, preprints, theses, books, and other documents, including selected Web pages that are deemed to be ‘scholarly.’
In another blog post, we’ll explain how to set up email alerts for your disease using Google Scholar.
Watch this Google Scholar tutorial
What do you do to search on Google more efficiently? Share your tips with us!