10 Benefits of Online Health Communities for Patients and Caregivers

Virtual Support for Health Concerns

Man using laptop outside in park
Jovo Jovanovic/Stocksy United

Online health communities (OHCs) exist for all varieties of chronic diseases and health issues. Members interact via forums, blogs, chats, and other forms of messaging. Some OHCs are stand-alone communities, while others are integrated into social networking or other websites. While OHCs aren't designed to replace health care providers, they can be a valuable resource for people seeking assistance in dealing with health issues.

Whether you are looking for yourself or for a friend or family member, consider these potential benefits of OHCs described below.

1) Encouragement and Motivation

Dealing with a chronic health condition takes a physical and mental toll. Are you getting frustrated dealing with your chronic back pain? Sometimes you need to hear a gentle, encouraging word from someone who understands your situation. 

2) Advice and Information

If you have a specific question about your diagnosis or treatment, consulting with a trusted health care provider is still recommended. After diagnosing themselves by searching online, most people still follow up with a medical professional to discuss the issue, according to a report from the Pew Research Center.

However, questions about coping with a health condition might be best answered by fellow patients. For example, what are the best ways to remember to medications at night?

Or where can you find clothes to wear over an ostomy bag? How can you sleep comfortably with a CPAP mask for sleep apnea? Numerous OHCs are ready to help. Members of OHCs often share how they deal with day-to-day issues from a firsthand perspective. 

3) Success Stories

Nothing is more inspiring than hearing about how somebody else has overcome the same challenges that you are facing.

It's even more powerful when that somebody is similar to you in important ways. 

4) Recognition for Success or Positive Events

A pat on the back for a job well done provides positive reinforcement. If you were able to lose 10 pounds in a healthy way, share this with your new online acquaintances. Or if your CT scan came back negative, fellow patients will breathe a sigh of relief with you.

5) Accountability

Sometimes it is helpful to be accountable to others about goals and commitments. For example, if your goal is to walk 20 minutes a day, then checking in with an online partner can keep you on track.

6) Camaraderie

Sharing stories, encouragement, and advice with people who have had similar experiences can make you feel like part of a group. You're all going through it together. This is especially valuable if you can't peers in your local community with the same health condition.

7) Convenience

While face-to-face support groups can be helpful, they are only effective to the extent that you can attend the meetings.

A major advantage of OHCs is that you can connect with others anywhere where you have Internet access.

8) Anonymity

You might be embarrassed to discuss certain details with family and friends. In joining an OHC, you can limit the amount of personal information you want to disclose. No one needs to know your real name. Feel free to open up. 

Note that although the content you post may be anonymous (not linked to your personal identifying information), it may not be private. In open OHCs, other people can view forum posts without joining the community. Keep this in mind when choosing your username, especially if you have the same username on other social networks.  

9) Tangible Support

OHCs are great places for finding out about local "real world" health resources. Members can learn about exercise classes, farmer's markets, highly recommended physicians, or research studies that are recruiting participants. 

10) Giving Back

If you've enjoyed the benefits of participating in an OHC, then helping other members can be a rewarding experience. Some members remain active on the site primarily to help others.

 

If you are able to do so before joining an OHC, peruse the forums to get a sense of how it might fit your needs. Don't be surprised if most messages are posted by a small group of extremely active members. This 1 percent rule has been documented in several OHCs.

Also follow up with your doctor to verify information about your diagnosis and treatment that you encounter on an OHC. Hopefully, you'll be able to better manage your health with a combination of guidance from your doctor and support from OHCs. 

Sources:

Fox S and Duggan M. Health Online 2013. Pew Research Center, Washington, D.C.  Accessed on May 30, 2014.

Hwang KO et al. Social support in an Internet weight loss community. Int J Med Inform 2010; 79(1): 5–13. Accessed on May 27, 2014.

van Mierlo T. The 1% Rule in Four Digital Health Social Networks: An Observational Study. J Med Internet Res 2014;16(2):e33. Accessed on May 29, 2014.

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