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Online chats allow patients, physicians and advocates to share insights, experiences
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I have written previously about the ability of Twitter to facilitate conversations around topics relevant to hematology and oncology.
I recently learned about a new way to use Twitter to rapidly bring multiple stakeholders together into a shared dialogue.
Michael A. Thompson, MD, PhD — a practicing oncologist and medical director of cancer research at Aurora Health Care in Wisconsin — has particular expertise in malignant hematology and social media.
He recently blogged about the rise of online patient communities and the interest many patients have expressed in interacting with expert health professionals in a way that goes beyond simply reading online health information but stops short of obtaining a formal clinical consultation.
William Wood
As a way of facilitating this type of dialogue in the area of multiple myeloma, Thompson used a Twitter hashtag for multiple myeloma and social media (#mmsm) and set up an online Twitter Chat that took place Sept. 15.
There are several free ways to host or follow Twitter Chats — or Tweet Chats, as they are sometimes called. One option is twubs.com/twitter-chats/about.
These discussions are ways to use Twitter to talk about a common topic with others during a preset time, using Twitter hashtags to view and participate in the conversation. Conversations often are organized into a series of planned questions to facilitate the discussion.
Diverse participation
I was curious to see how a Twitter chat worked, so I signed in at the designated time and followed along. The discussion was very interesting. As a benefit of having this done on Twitter, the entire conversation is archived and analytics are available at www.symplur.com/healthcare-hashtags/MMSM/analytics.
During the 2-hour chat, there were 374 tweets — sometimes with an accompanying Web link — from 36 participants. Through these analytics, an “impression” is defined by a tweet multiplied by the author’s number of Twitter followers. Using this metric, there were 756,208 impressions generated during the chat period.
When I looked at the participants in closer detail, I saw multiple groups represented. Active participants included community oncologists, bone marrow transplant physicians, myeloma academicians who were chairs at their respective centers, patients and patient advocates. Geographically, participants came from all across the country and all over the world. Within academics, many of the largest-volume and most distinguished centers in myeloma were represented.
Looking through the transcript, I could see that several important discussion points were covered. They included:
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Management approaches for neuropathy;
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Useful sources of myeloma-related information for patients;
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Institution-specific myeloma treatment guidelines;
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Observations about efficacy and toxicity of new myeloma therapeutics;
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Ongoing national trials designed to address controversial management areas;
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How and when to treat smoldering multiple myeloma;
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International working groups and guidelines for diagnostic and staging strategies;
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Interpretation of published manuscripts;
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Racial disparities in outcomes; and
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Barriers to clinical trial accrual.
Patients and advocates related many of their own thoughts on all of these topics. Some described their personal experiences, and a few asked follow-up questions of the chat group that others answered as best as they could within this online setting.
Subsequent to this Twitter chat, I learned of others like it, including a lymphoma chat that occurred within the past few weeks, a previous lung cancer chat and an ongoing series of chats related to breast cancer.
A shared conversation
There seem to be several benefits to this type of forum for shared conversation.
First, Twitter chats are an effective and efficient way to bring together participants from across the cancer landscape — including patients and clinicians — who can talk with and learn from each other in a virtual town hall–type format. As a result, patients can share experiences and insights that may not be obvious to practicing clinicians but may, in turn, generate changes in practice or open up new lines of research. In turn, clinicians can communicate key practice changes or research findings to participants from the patient community.
This type of forum also is an interesting potential way to address barriers to clinical trial enrollment by publicizing and disseminating information about specific trials or more general information about how to navigate the clinical trials landscape.
My initial experience with a Twitter chat was eye-opening and once again revealing about the power of social media to bring communities together to share insight and knowledge. I’m already looking forward to the next myeloma Twitter chat. For anyone who is interested in learning more about this, please contact me. I’ll be happy to share.
References:
Katz MS. ASCO Connection. 2013. Hashtag folksonomy for cancer communities on Twitter. Available at: connection.asco.org/Commentary/Article/ID/3590/Hashtag-Folksonomy-for-Cancer-Communities-on-Twitter.aspx. Accessed on Oct. 7, 2013.
Thompson MA. ASCO Connection. 2013. Online patient communities for the E-patient: “Betwixt and between” a new patient and an expert. Available at: connection.asco.org/Commentary/Article/id/3645/Online-Patient-Communities-for-the-EPatient-Betwixt-and-Between-a-New-Patient-and-an-Expert.aspx. Accessed on Oct. 7, 2013.
For more information:
William Wood, MD, is an assistant professor of medicine in the division of hematology/oncology at the University of North Carolina in Chapel Hill. He also is a HemOnc Today Editorial Board member. He can be reached at UNC Health Care System, Division of Hematology and Oncology, 101 Manning Drive, Chapel Hill, NC 27514; email: william_wood@med.unc.edu. You also may follow him on Twitter (@WoodBD).
Disclosure: Wood reports no relevant financial disclosures.