So, how do you get started when it comes to researching your disease and treatments options? There are several places and resources you can turn to for reliable information. Here is some information to get you started:
- Your medical provider: Your primary care physician or specialist can be an excellent first stop for information and resources. Ask them to direct you to resources, organizations, and literature for reputable information that you can access and review on your own schedule.
- Medical websites for the general public: There are several health websites that provide medical information for the general public. Often, these sites break down a medical condition or disease in easy to digest sections, such as Cause, Diagnosis, Symptoms, and Treatment and provide additional, reputable resources for review. Visit the Western Medicine (General Medical Information) section on the Resources page for a list of helpful websites.
- Government health agencies: The Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH) provide scientific information, data, and statistics covering a wide array of health and medical topics. While some content is written with the scientific or medical community in mind, much of the published content is presented using easy to understand language. In general, health and medical URLs ending with “.gov” can be considered reputable and provide an excellent source of information.
- Disease specific websites: If you’ve been diagnosed with a long-term disease, chances are high that there is at least one website – and likely many more – dedicated to it. Many of these websites are hosted by disease specific organizations, associations, or foundations. These websites typically provide much more comprehensive information related to a specific disease than general medical websites. In addition to providing information on the disease itself, disease-specific websites often contain information on standard and emerging treatment options, lifestyle and behavioral factors, disease and symptom management techniques, specialty physician locators, and support resources. Additionally, disease specific organizations are usually one of the best resources to turn to for information on clinical trials, emerging therapies, and current, disease specific news. A list of disease specific organizations and websites is available on the Resources page, or a quick internet search should also direct you to reputable organizations (Example search: “Lupus organization”).
- Online medical literature databases: When clinicians and scientists perform medical research, including clinical trials, results are published in peer-reviewed medical journals (learn more about the peer review process and why it is so important). Typically, only research studies deemed to be of high quality make it through the peer review process. PubMed is the online, searchable citation database for most published biomedical literature contained in peer reviewed journals. It is an excellent resource for locating high-quality medical research on a specific topic and for keeping up to date with the most current findings and emerging therapies. However, published biomedical literature is written for the scientific and medical communities. Therefore, article content may be difficult for the general public to understand. That said, scientific literature provides valuable information.
TIP: If you find research articles you are interested in but you don’t fully understand, save them for review with your doctor or a friend, family member or colleague with a medical or scientific background
- Reputable listservs: Joining email listservs of reputable organizations is a great way to keep current on news, events, and breakthroughs related to a particular disease or health area. You’ll find that most health and medical websites have a link to enter your email address, if you’d like to be included in the organization’s e-mail list. This is a good strategy for staying engaged with the organizations you trust and regularly turn to for information.
TIP: Be skeptical of sharing information with any “.com” sites, which typically consist of for-profit businesses that may be trying to sell something
- Google alerts: Monitor the web for news and updates about a particular topic using Google Alerts. You can enter in your medical condition, the name of a therapy or drug, or any other terms or phrases of interest to you (at Caring Ambassadors, we have a daily Google Alert set up for “integrative medicine or health”). Google will scour the internet for news and articles related to your search terms at a frequency set by you and deliver results directly to your inbox. It’s a great way to keep current and learn about the most recent happenings in health, medicine, wellness…or any topic you choose.
TIP: Google Alerts scours the entire internet for items related to your search terms, but don’t assume that the results emailed to your inbox represent credible organizations or evidence-based research. Always critically evaluate the information you review on the web.
- Your local library: Your local library can be a valuable resource throughout your research process: use it!
TIP: Libraries offer (free) computer and internet access for members, as well as access to printers.
TIP: Most libraries hold subscriptions to print and online scientific and biomedical journals, as well as scientific literature databases.
TIP: Librarians are skilled in library sciences and are often available to help you navigate the research process and identify relevant, credible information.