Get Informed

Gain knowledge, and gain control.

To be an ambassador for your own health, it’s important that you take the time to learn about your chronic health condition(s) and the health care options available to you. You don’t need to have any sort of formal scientific education to improve your understanding of your medical condition(s) and how they are treated, just a willingness to learn and someone to point you in the right direction. There are plenty of tools and resources available to help you get started on this journey of discovery and assist you along the way.

Information about your health can help you navigate the road ahead in many ways.

You can go into your health care appointments as an active participant, prepared with important questions, which might lead your care in new directions.
You will be able to better explain your health situation to family and friends.
You may find that more information helps you to stop worrying about the unknown and find peace.
Lastly, information empowers. By arming yourself with information, you can gain control over the decision that lie ahead.

Knowledge is important when it comes to management and recovery from a chronic health condition. However, there is a tipping point when information hurts more than it helps. Too much or the wrong kind of information has the power to overwhelm and cause feelings of anxiety and depression, especially if you have been newly diagnosed. Protect your mental and emotional health: if the amount or content of the information you are finding is causing you to become stressed, anxious, or depressed: step away. Take part in an activity that brings you joy and peace. Remember, you are the same person you were before your diagnosis; a diagnosis does not define you, nor will the information you find online shape who you become. Keeping a positive attitude and supporting your mental health is just as important – if not more so – than being informed on every aspect of your health.

Performing Research

How do you get started when it comes to researching your condition 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 health care providers: Your primary care physician, specialist, or any member of your health care team 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 Health Care 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 chronic health condition, 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 Healthcare 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: Visit the National Library of Medicine’s website for a user-friendly PubMed search tutorial.

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: We encourage you to only share your email address or any personal information with trusted sources: always read the organization’s privacy policy.

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.

Evaluating Information

Ask the right questions.

Information empowers, but finding trustworthy information – especially online – can be challenging and frustrating. The amount of information can be overwhelming, and it is often difficult to figure out what is real. It is important to maintain a healthy amount of skepticism and critical eye as you conduct your research. Here are five quick questions to ask yourself when evaluating the content of a health website, provided by the National Center for Complementary and Integrative Health (NCCIH):

Who? Who runs the Web site? Can you trust them?

What? What does the site say? Do its claims seem too good to be true?

When? When was the information posted or reviewed? Is it up-to-date?

Where? Where did the information come from? Is it based on scientific research?

Why? Why does the site exist? Is it selling something?

View the NCCIH’s article on evaluating online health information

Researching and Evaluating Integrative and Complementary Medicine

At Caring Ambassadors, we encourage you to take an integrative approach to your health, exploring and using standard, western medicine along with complementary and lifestyle approaches to help you achieve optimal health and well-being.

A true integrative approach to health and medicine is always evidence-based, but the term “integrative” has at times been used irresponsibly or incorrectly, and some of what is published on the web about integrative health can be misleading. When researching integrative health approaches, complementary medicine, mind-body practices, and lifestyle and behavioral changes, evaluate the information you find carefully and critically.

For credible, evidence-based information on the topic of integrative and complementary medicine, start with the resources listed below:

TIP: www.trustortrash.org is an online, interactive tool for evaluating websites and health information found online.
Bookmark this site, and pull it up when you need help determining whether online information is credible.

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