Kidney Cancer Patients Take to Twitter for Support, Info

— Social media platform may be useful for trial recruitment, researchers say

Last Updated November 6, 2017

MIAMI -- Twitter may help healthcare professionals and researchers recruit renal cell carcinoma (RCC) patients for clinical trials, researchers suggested here.

In a 3-week period in August, more than 2,000 tweets regarding treatment and support for RCC patients appeared on the social media platform, including more than 200 tweets that focused on clinical trials, said Meghan Salgia, of the City of Hope Comprehensive Cancer Center in Duarte, California, and colleagues.

Action Points

  • Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.

"Social media plays an increasing role in health-related communications both amongst patients and physicians," the authors noted in a poster presentation at the International Kidney Cancer Symposium. "Twitter was used to receive and give psychological support; share personal narratives of cancer; promote prevention; share research findings, and discuss treatment option."

For this study, "we looked just for the phrase 'kidney cancer.' We found that the three most often Twitter discussions on the subject of kidney cancer were support, treatment, and general issues. Individuals were usually tweeting about support; organizations were usually the ones tweeting about treatment," Salgia told app.

"We found it was interesting that there was so much talk about treatment and about clinical trials," she added. "We were thinking that this could be a good platform for providers and for patients who want to get into clinical trials, as well as different parts of the treatment process."

From Aug. 1, 2017 to Aug, 22, 2017, Salgia's group analyzed Twitter feeds, and collected 2,568 tweets. They excluded 36 tweets that were not in English and another 435 that were not deemed to be RCC-related, leaving 2,097 tweets for study inclusion. Individual posts were characterized by content domain, and user type, and reviewed by two independent reviewers, the authors explained.

Of the 615 tweets on support and support services, 547 were from individuals, 22 were from institutions, and 46 were from media. Treatment issues were touched on by in institutions (480 of 536 tweets), while a much smaller volume came from media (42/536) and individuals (34/536).

There were 282 tweets classified as general information, with 128 from institutions, 69 from media, and 85 from individuals.

Prevention was the subject of 23 tweets from individuals and one tweet from an organization.

Diagnoses were covered in 252 tweets, specifically 84 from institutions, 74 from media, and 94 from individuals.

Donations were the subject of 108 tweets, including 68 by institutions, 15 from media, and 25 from individuals.

Finally, clinical trials were the subject of 258 tweets: 81 from institutions, 118 from media sources, and 59 from individuals.

"These findings suggest that this is a promising platform to address health disparities and specific topics such as goal of care and prognosis, treatment selection, end-of-life care and potential side effects," the authors noted.

"I really think that using Twitter and other social media we could leverage these platforms to get people interested in jointing clinical trials," commented Victoria Xue, manager of digital and social media for the Kidney Cancer Association. "Twitter could be a good way to approach people and engage them in discussions about clinical trials."

However, Xue cautioned about accepting Twitter comments at face value. "When you are dealing with Twitter, you have to make sure that what is being posted comes from an organization with credibility and comes from a trustworthy sources," she told app.

The Kidney Cancer Association gets "a lot of interaction with patients, and others, regarding kidney cancer on Twitter, on Instagram, on Facebook," stated Xue, who was not involved in the study. "They tell us their stories; they tell us what they need and suggest how we can help. In 2017, social media is very important to be able to get in touch with people."

Xue also said that use of Twitter could be a method to reach people across borders for information on clinical trials as well. "I think this could be a very easy way to get people involved in international clinical trials," she noted.


Salgia and Xue disclosed no relevant relationships with industry.

Primary Source

International Kidney Cancer Symposium

Salgia M, et al "Characterization of Twitter-based dialogue related to renal cell carcinoma," IKCS 2017.