Social Media and Your Health Information

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Wednesday, October 15th, 2014

Anything on the internet can survive forever.

While this sentence can be scary, it is, unfortunately, often too true. We – you, I, our friends and family – often use social media for communication and information gathering. There are sites, such as Twitter and Facebook, where people share much more than health care information, as well as health care and disease-specific sites such as Patients Like Me.

There are definite benefits to using social media to solicit and receive support for our health related problems.  For example, the disease-specific sites can help patients, especially those with rare diseases, identify peers and create a community.

As with anything digital, though, it is important to use discretion. When using the internet to seek out support, there are a few key things to remember:

• Any social media site not related to a health care provider or payer is generally not subject to state and federal privacy regulations.  While these regulations and laws do vary by state, it’s better to presume no protection exists.  If you post the information, the presumption is that you meant for it to be released.
• The Privacy Policy for many of these social media sites allows them to share your data with other third parties, including pharmaceutical and medical device companies, among others. 
• Information on social media sites is often not vetted for validity and reliability.  While most people and posters mean well, anecdotal experiences or unsubstantiated data may need to be carefully considered.

Consumers interested in learning more about how to determine the validity and reliability of online health information can use trusted sources like these:

• MedlinePlus Guide to Healthy Web Surfing
• Finding Reliable Health Information Online
• Evaluating Health Information
• MedlinePlus Quality Guidelines

It is important for us, as consumers of health care, to become and remain engaged in our care.  This means we need to access our information and, when appropriate, share our information with those who can help us. We also need to exercise caution with our information, for once it is posted or released on the internet it can almost never be retracted.

written by Susan Fenton, PhD, RHIA, FAHIMA