Online Patient Communities Play a Critical Role in Health Decisions

Living in a digital world has made the ability to connect with people online a daily part of life.  In healthcare, it has become the place that patients turn to for information and peer-to-peer support.

Patients are going online to discuss personal experiences with medication and to seek advice on how to talk to their doctors and beyond.  Patient Influencers, those who are truly leading these health communities, are playing a critical role in what actions patients choose to take in their own health journey.

When thinking of the role of online patient communities and how they impact treatment decisions, AnneMarie, a Breast Cancer Patient Influencer, shares:

“The folks who are seeking advice know who they can rely on, count on, and know that they’re getting accurate information. They generally seek those people to help frame the questions, and once they’re armed with the questions, they have more confidence to go discuss things with their doctors.”

In a comprehensive Behavioral Intent Study, WEGO Health surveyed 433 followers of Patient Influencers within seven online health communities to understand:

  • Do online communities influence health decisions?
  • What behaviors are motivated by receiving information online?

The report, “Role of Patient Influencers: Do online communities drive doctor conversations?”, revealed overwhelmingly that online communities are extremely important when it comes to sharing health information.  In fact, 91% of the study participants say that online communities play a role in their health care.

“Online communities are resources for patients or caretakers to get feedback from people who may be going through similar experiences or who may have been on a specific medication for a longer period of time and can elaborate on potential side effects and/or medication cost.”

 – Marnina, IBD Patient Influencer

The report also reveals this important piece: when information is shared by someone influential, participants are likely to take action.


More specifically, we’ve summarized some stats for you here:

When information about a specific medication is presented by a pharmaceutical company and shared by someone influential:

  • 87% will ask their physician about the information
  • 85% will share the information with people they deem as interested

When information about a medical condition is presented by a pharmaceutical company and shared by someone influential:

  • 91% will ask their physician about the information
  • 89% will share the information with people they deem as interested

When health information is presented by someone influential:

  • 93% will ask their physician about the information
  • 94% will share the information with people they deem as interested

Pharmaceutical companies have a great opportunity to arm Patient Influencers with the right information and resources to share with their online communities. Patient Influencers are driven to educate their communities, and many of them want to work with Pharma including Diabetes Patient Influencer, Mark-John, who stated:

“I would enjoy being out there, speaking for pharmaceutical companies that I believe in and helping them get information across to the community, as well as encouraging community members to get involved with this pharmaceutical company.

I think pharmaceutical companies are missing the boat when they don’t use health leaders out there because a lot of people are leery of pharmaceutical companies. But if a health leader is out there speaking because they have used the product or they believe in the product, it’s going to be less intimidating to that person to listen to what his health leader has to say.

The pharmaceutical company is going to gain a lot of insight that they never could get any other way.”


For your copy of Behavioral Intent Study Part II: Role of Patient Influencers: How do patients truly share information?, download the second report here.

Source of quotes – WEGO Health’s Role of Patient Communities in Treatment Decisions