Social Media in Oncology: Does It Help Patients?

David Graham, MD


May 03, 2016

The growth of social media in medicine, particularly oncology, has been impressive. The uses to date have varied from live reporting of meeting presentations to community development and support in any number of diseases. The American Society of Clinical Oncology (ASCO) 2015 Annual Meeting had over 74,000 tweets in the month surrounding the actual meeting dates, leading to over 330 million impressions. An "impression" is a tweet that has been delivered to a feed. To relate it to the statistic above, tweets from the ASCO annual meeting were delivered to over 330 million feeds. The 2016 American College of Cardiology conference has had over 31,000 tweets leading to over 197 million impressions. This is just a small sampling of all the information that comes out of conferences.

Using social media for disease/treatment community development and support is also expanding. From dedicated Facebook pages to live Twitter chats, patients now interact with providers and advocates, often in real time. As I write this column, Symplur, a company that monitors and analyzes social media activity in medicine, reports 127 recurring Twitter chats in the upcoming week. Topics vary from rheumatoid arthritis, autism, and movement disorders to various malignancies, among many others.

Now that social media has a firm foothold in medicine, it becomes reasonable to ask whether it is having any impact on patient care or outcomes. This question has been raised in any number of supportive activities in medicine. There are certainly reports that online support groups benefit patients,[1] but the definition of benefit has tended to be somewhat nebulous at best. The first question to ask is, what is an appropriate thing to measure?

Now that social media has a firm foothold in medicine, it becomes reasonable to ask whether it is having any impact on patient care or outcomes.

In oncology, our usual measured outcome is survival, although quality of life is often co-reported. Quality of life, however, is rarely the primary outcome looked at in any intervention. There have been suggestions that support groups can improve survival in breast cancer, but at least one randomized trial failed to show any impact on survival in breast cancer patients.[2] Is survival the only outcome that we should measure? Can we accept improvements in quality of life as an actionable outcome? What if we show that patients who are involved in social media communities are more likely to be compliant with their care or be more open to clinical trial participation? Would that information be persuasive enough to have granting organizations, institutions, and payers be more open to providing support and recognition to the physicians and support staff involved in these activities?

Answering these questions will take a level of analysis and research that requires external support. To even get to the level of information and structure that granting organizations will be open to reviewing requires some firming up of ideas. There are physicians who are mulling these questions and starting down this path.[3] One such group in development is the Collaboration for Outcomes on Social Media in Oncology (COSMO). This group, of which I am a member, is looking at this with a blank slate, other than initially defining the best questions to ask. We have no hesitation—should the data point in this direction—saying that no positive impact can be determined by these efforts. We also have no problem saying that others may have thoughts on questions to be asked or approaches to take. In the spirit of crowdsourcing, we welcome any input. There are rumblings of an abstract to be presented at the next ASCO Annual Meeting suggesting improvement in survival with the use of patient navigators. Possibly the same could eventually be found with patient involvement in social media.


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