Abstract

Keywords: Online patient communities, Twitter, hashtag communities, e-patients, patient empowerment.
Citation: Harmel M, Young K. e-Patients in twitter hashtag communities . J Participat Med. 2013 Jan 16; 5:e22.
Published: May 29, 2013.
Competing Interests: Kelly Young is the founder of the Rheumatoid Patient Foundation.

 
The use of social media by e-patients as recorded on Twitter serves both as a means to track the growth and activity of the patient communities and, more importantly, to provide a way for patients to interact. What originally began as a way for patients to connect for emotional support and to expand their ability to manage their condition has expanded to a larger shared community interaction of patients, caregivers, and healthcare providers.

This shared community is now starting to be mirrored in conferences that either have invited patients, or that share their content outside conference walls to a larger mixed audience, and on research advisory boards (as we see in the new Patient-Centered Outcomes Research Institute (PCORI) that determines funding for research that is driven by patients’ needs).[1][2]

The Rise of Hashtag Communities

These community interactions are made possible by use of the simple # symbol (known as a hashtag) that is used to indicate a topic, conversation, or event on Twitter. This allows connections to be formed, for example, in disease-oriented communities such as the rheumatoid disease group that Kelly Young organized around the hashtag #rheum.

These hashtag signposts allow users to create specific “conversation communities” for a concentrated hour-long “Twitterchat” that can develop into an on-going discussion about the topic. A collection of healthcare-related hashtags can be found at the “The Healthcare Hashtag Project” and with a great deal of work plus some computer magic by Audun Utengen, the co-founder of Symplur, data from community archives was tracked to visually show their development.[3]

The initial analysis of this immense collection of data shows the rise of patient communities on Twitter over a 22-month period starting on September 2010.[4] The indication of this shift is visualized by green dots representing patient-oriented conversations where the size of the dots expands with the volume of the conversation. In Utengen’s video illustration, all activity increases over this time; the participation shifts from the more professional/provider-oriented conversations at the beginning of the movie (represented by pink dots) to a greater concentration of green, patient-focused discussions.

In this slice of the data it appears that patients and providers inhabit different orbits, but a closer examination of one breast cancer social media (#BCSM) community shows more of a melting pot of the two communities. Reviewing the profiles of the major participants of a recent one-hour Twitter chat reveals a core group of patients leading the chat with a number of connections leading to nurses, physicians, and a pharmacist.[5]

Each community has its own particular characteristics – in the breast cancer example there is a core of three patients leading the conversation, while in other groups there is a central member that bonds the entire group.

The #rheum network demonstrates the centrality of Kelly as she moderates the conversation with her Twitter handle @rawarrior.[6] It is fascinating to watch how connections dynamically change over time, yet Kelly always remains the core of this community. This is even true when new research released by the Mayo Clinic attracts @SocialMediaShan, but her interest isn’t enough to affect the discussion in the core #rheum community.

Creating #rheum for the Rheumatoid Online Community

In 2009 as Twitter exploded, I [Kelly Young] began to blog about the disease that had utterly stolen so much of my health and life. My goals were to destroy common myths, increase research, and provide support for people with this misunderstood disease, known as rheumatoid arthritis (RA) or rheumatoid disease (RD). It seemed a natural thing to get a Twitter account and call it “rawarrior,” the same as my URL. I immediately found Twitter enjoyable and valuable for both learning and communicating ideas. It seemed an honor for anyone to follow me (non-tweeters: to follow means to subscribe to a person’s feed), and I determined to be a worthy Twitter-citizen. Thoughtfully, I strove to provide value (humor counts), balance personal tweets, and develop relationships through paying attention to others’ needs.

Every day new people found and followed me. When greeting new followers, I often learned by private message or public tweets that they also suffered with RD. But either way, only I saw the thousands of tweets related to rheumatology topics. So I spent a lot of time introducing people to one another and connecting conversations between patients, professionals, and others interested in rheumatoid disease. Using the established hashtag #hcsm (health care communications for social media), I had learned the potential of hashtags to allow people to connect. A hashtag for rheumatology was a simple solution to the problem of connecting people discussing rheumatology topics. Therefore, on October 12, 2010 I created the #rheum hashtag with a blog post proclaiming that “#rheum” would enable a conversation to become a community. No word can describe the result better than magical.

Here are few things we see repeatedly in the #rheum community:

• Patients find needed medical information or doctors;
• Friendships are established, including offline meetings;
• Local support systems are formed;
• Caregivers are supported and encouraged;
• Professional rheumatology colleagues form collaborations;
• Research is discussed and evaluated in detail;
• Novel ideas for research are discussed;
• Physicians say they’ve become better doctors via #rheum observations; and
• Patients promote good research and trustworthy organizations.

After following for a short time, it’s apparent that #rheum is one of the most constructive, empathetic, and effective communities online or offline. Patients or care providers learn from the community and find information, whether or not they are comfortable tweeting. Recently I was at a medical conference exhibiting with our nonprofit Rheumatoid Patient Foundation and I got a tweet from a woman two hours away who wanted to volunteer. Soon, she was tweeting with our volunteer coordinator and then riding on a train to join us!

Through Twitter, any person can post information, or speak about an experience, and hashtags enable anyone else interested in the subject to access that information instantly. Through the use of the #rheum hashtag, we’ve seen phenomenal community growth, but even more significantly, there is an obvious expansion of knowledge and support. As the Symplur visualizations illustrate, connections and networks shift dynamically, representing the expansion of information. These dynamics represent a force for improvement in medicine, largely driven by patients.

References

1. Analyzing Twitter Conversations from Healthcare Conferences. Symplur. Available at: http://www.symplur.com/blog/analyzing-twitter-conversations-from-healthcare-conferences/. Accessed May 20, 2013. ↩
2. The Healthcare Community Helps PCORI Evaluate Funding Applications. Patient-Centered Outcomes Research Institute. Available at: http://www.pcori.org/news-room/videos/?playlist=PL2i6nTuOk4qAm2b1SEuntRlz2szUlHscI. Accessed May 20, 2013. ↩
3. The Healthcare Hashtag Project. Symplur. Available at: http://www.symplur.com/healthcare-hashtags/. Accessed May 20, 2013. ↩
4. Utengen A. The Rise of Patient Communities on Twitter – Twitter Visualized. Symplur. Available at: http://www.symplur.com/shorts/the-rise-of-patient-communities-on-twitter-visualized/#!prettyPhoto/0/. Accessed May 20, 2013. ↩
5. Utengen A. The Flattening of Healthcare: Breaking Down Barriers in Healthcare Social Media. Available at: http://www.symplur.com/shorts/the-flattening-of-healthcare-twitter-visualized/. Accessed May 20, 2013. ↩
6. Utengen A. The Dynamics of a Twitter Patient Community – Network Centrality Analysis. Available at: http://www.symplur.com/shorts/dynamics-twitter-patient-community-network-centrality-analysis/. Accessed May 20, 2013. ↩

Further Reading

The blog post that started the Rheumatoid Online Community:
Young K. Twitter & a #rheum for the Rheumatoid Online Community. Rheumatoid Arthritis Warrior. Available at: http://rawarrior.com/twitter-rheum-for-the-rheumatoid-online-community/. Accessed May 22, 2013.

Acknowledgement

A big thanks to Symplur for creating the Healthcare Hashtag Project and to Audun Utengen for his initial analysis of patient communities.

COPYRIGHT NOTICE:

Copyright: © 2013 Mark Harmel and Kelly Young. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.