Like any endeavour in life, it’s best to be armed with some awareness of what to do and what not to do before proceeding. What follows are my tips for patients going online that clinicians might want to pass along. If you do, please acknowledge the source.

 Ten Tips for Patients Going Online

1. Inform yourself on what’s available.  There are lots of different options.
2. Try different applications. Download a monitoring app. Log your workouts. Follow a blog.
3. Find a site that’s checked by health professionals and community participants. Look for a commitment to removing or identifying misleading, inaccurate and abusive posts.
4. Find a site that allows you to post with a user name. It’s almost always better not to use your own name if you are going to share your experiences about your health.
5. Find out who is giving advice. Know if it’s a patient, a clinician or someone interested in selling or promoting something. Factor that into what you do with the information. If you can’t find out or have concerns, proceed with caution. Like everything in life, you have to assess the risks and benefits.
6. Find out who owns the site. It provides a lot of insight into what is featured on the site.
7. Check with your health team before making changes to your treatment plan. A reputable site will recommend that you do this. Your health team considers all aspects of your health. What works for one person may not work for you.
8.  Read the privacy policies on sites before you join a site. Are their policies clearly written? Can you figure out if your personal information will be shared with advertisers and how that might happen? Will you be contacted by other organizations? Who can access your information? You need to know and be comfortable.
9. Use Facebook pages as an information source. ‘Liking’ Facebook pages is a great way to get information delivered to your page on Facebook. However, think twice before sharing health related information. That’s your ‘real’ identity on Facebook; people can track back and link it with other aspects of your life.
10. And finally, participate. That’s how you will get the most benefit. Interaction can help you feel happier, improve your health outcomes and help answer your questions.

If you’re interested in another take, an article on Weitzman et al.’s (2010) work on analyzing sites offered the following safety tips:

Safety Tips for Patients Using Online Social Networks

1. Look for sites where the basic description of the disease and how to care for it is consistent with information provided by your doctor. Be very cautious of sites that advertise miracle “cures.”
2. Find the privacy policy of any website where you register as a member, and make sure that you understand it.
3. Try to use sites where you have maximal control over the sharing of your health data — where you can designate whether the information you disclose will be available to anyone online, members only or members who are “friends.”
4. Look for websites that clearly label advertisements and disclose conflicts of interest.
5. Try to use sites that have moderators and at least periodically undergo external review.
6. Always remember that going online is not a replacement for visiting your doctor.

Remember, a caution sign is not a stop sign. There’s a lot of good online for people with chronic disease. Health care providers can do a lot to help their patients benefit from social media use.

References

Boston Children’s Hospital. (2011, February 8). Quality varies in social networking websites for diabetics. Accessed at (http://childrenshospital.org/newsroom/Site1339/mainpageS1339P687.html)

Weitzman, E., Cole, E., Kaci, L., & Mandl, K. (2010). Social but safe? Quality and safety of diabetes-related online social networks. Journal of American Medical Informatics Association 2011; 18, 292-297.