The 2014 MDigitalLIfe Social Oncology Project Report


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One year ago, the Social Oncology Project 2013 report was published ahead of the American Society of Clinical Oncology’s annual meeting, for the first time quantifying the scope and nature of digital conversations about oncology - over 16 million of them.

In 2014, we're focusing in on the trends in those cancer conversations, paying particular attention to those we've culled from the MDigitalLife data set – the world's first and only database that maps physicians' digital properties to their official government registries.

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The 2014 MDigitalLIfe Social Oncology Project Report

  1. 1. 2 Social Oncology Report One year ago, the Social Oncology Project 2013 report was published ahead of the American Society of Clinical Oncology’s annual meeting, for the first time quantifying the scope and nature of digital conversations about oncolo- gy. However, with only a single set of data points, it was impossible to provide any sense of change. More than 16 million news stories, forum entries, blog posts and tweets were recorded between May 2012 and May 2013, but the degree of context available was limited. This year, more data is available, offering additional perspective not only on the actual volume of conversation from May 2013 to May 2014, but also how those conversations differ as compared with the year prior. From May 2013 to May 2014, there were about 14.8 million conversations about cancer online, split between news (2 million mentions in digital out- lets), blogs (198,000 posts), forums (54,000 entries) and tweets (12 million). This reflects a modest decrease over the numbers seen in the previous year, where 16.3 million conversations were recorded. Overview The Year of the Emergent Conversation
  2. 2. 3 Social Oncology Report The declines observed were not consistent, either in the type of media or the type of conver- sation. There were more news stories archived digitally that mentioned cancer in 2013-2014 than in 2012-2013, but numbers of blog posts, forum entries and tweets all fell. And some cancer types saw increases in conversa- tion volume: lung cancer and co- lon cancer mentions rose, even as breast and prostate cancer men- tions dropped. TotalConversationVolume TotalDeaths
  3. 3. 4 Social Oncology Report But as will be discussed in more detail later in this report, these broad strokes – news up, Twitter down; lung up, breast down – obscure an even more important reality. There remains enormous growth in certain important niches, notably cancer hashtag communities and physician conversations. The growth seen in those areas hints at the direction the online conver- sation may be headed, toward more specific, more focused, smaller-group interactions. Physician conversations about cancer trended up about 20 percent this year, according to an MDigitalLife analysis that was made public in advance of this year’s ASCO annual meeting, driven not simply by oncologists, but by a constellation of medi- cal professionals who live in the shadow of cancer, working to treat or prevent malignancies. And hashtag conversations were also emergent; while pioneering, established communities, such as the #BCSM breast cancer group, were essentially flat, dynamic new online villages sprang up around other cancer types. A lung cancer hashtag – practically non-existent a year ago – now generates hundreds of conversations a week. A similar effort in myeloma launched last summer has shown how robust interaction can be even in narrower cancer types. And looking at the volume of discussion around the ASCO meeting in 2013 showed dramatic and sustained growth in conver- sation among attendees, creating a diverse mix of physician perspective, media sharing and investor commentary. Those emergent conversations, however, augment – not replace – the trends that were first observed a year ago in the Social Oncology Project 2013. That report noted that the topics that drove spikes in cancer conversations were often universal: the nation turned its attention to awareness months and cancer news in popular culture. Indeed, this year, the highest-volume date for mentions of cancer online was Sept. 30, where those two trends converged. Sept. 30 is the eve of breast cancer awareness month, which has always prompted a large and sustained increase in conversations. But Sept. 30 (and a similar spike on Sept. 29) also generated commentary from those discussing the demise of Breaking Bad’s Walter White, a man who was – for better or worse – the most famous cancer patient on television over the late summer and early fall. Niche Communities Awareness and Pop Culture
  4. 4. 5 Social Oncology Report The cancer conversation is increasingly dichotomous: fall- ing overall numbers but the rise of emergent communities. This reflects a maturation of the discussion of cancer, with more-educated participants having more sophisticated dis- cussions. Though smaller, deeper communities are forming, the democratic nature of social media means that they are not Balkanized: physicians, advocates, media, patients and caregivers are often all participating in the same arenas, in- creasing connections between often-isolated groups. Awareness months – identified a year ago as a driver of dig- ital volume – remain as important as ever by providing a rallying point for specific communities. The spikes in can- cer-type-specific conversations are almost universal, from the annual growth in breast cancer conversations in October to an almost-doubling of digital volume around ovarian can- cer in September for Ovarian Cancer Awareness Month. Physician interest in social media – particularly Twitter – is growing, a trend that is most clearly seen in interest around medical meetings. While the ASCO meeting each year prompts a clear rise in conversations, other gather- ings also drive sustained increases in social traffic, which the American Society of Hematology meeting in Decem- ber having a particularly profound effect on tweets about hematological cancers. Breast cancer remains the dominant cancer type in all audi- ences; as was the case a year ago, breast cancer conversa- tions exceed the combined total of lung cancer, colon can- cer, prostate cancer and lymphoma. This was a trend that was seen in both the overall dataset, as well as in the physi- cian-specific data, reflecting a three-decade-long legacy of efforts to make discussion of breast cancer mainstream. Looking across all the data gathered for the Social Oncology Project 2014, there are four themes that undergird the cancer conversation over the past 12 months:
  5. 5. 6 Social Oncology Report Though continued advances in the genetics and biology of cancer are increasingly prompting researchers to think about tumors in new ways, based less on the location of origin and more on the presence or ab- sence of certain biomarkers, the on- line conversation still remains siloed around traditional definitions of can- cer types. It’s notable that discussions of spe- cific cancer types make up the mi- nority of discussions of cancer on- line; “cancer” remains an easy and popular catch-all term. This has the effect of clouding discussions of specific cancer types, but the trends seen are clear enough despite the lack of precision in much of the on- line conversations (especially con- sumer-generated content on Twitter and forums). To better understand these more-specific conversations, de- tailed analysis was done of the five cancer types with the highest num- ber of deaths in the United States each year. As was the case in the pre- vious analysis, the volume of conver- sation is not correlated with burden of disease as measured by deaths; lung cancer kills three times more Americans than breast cancer, the number 3 cancer killer, yet breast cancer has more than four times the volume of conversation. Colon can- cer, which kills some 50,000 in the United States each year (more than any cancer type save lung), lags not only breast cancer, but lung cancer and prostate cancer in conversation volume. And pancreatic cancer kills nearly 40,000 yet generates less than 10 percent of the conversation of breast cancer. Conversations by Cancer Type
  6. 6. 7 Social Oncology Report Breast cancer remains the largest cancer type by volume by a large margin – some 1.4 million mentions over the period of analysis. That’s down from 1.5 million in the previous year, a decline driven mostly by Twit- ter conversation (930,000 in 2013- 2014 compared with 1.1 million in 2012-2013). News coverage, howev- er, jumped to 330,000 in 2013-2014 from 290,000 in 2012-2013. It is impossible to talk about online conversations about breast cancer without referencing the impact of Breast Cancer Awareness Month. On an average day, conversation volume for breast cancer averages around 3,700 (mostly tweets). But during Oc- tober, that figure jumps to 15,900 as the conversation swells. The impact is large enough that not only does the increased volume show in the breast cancer analysis, it has a profound im- pact in overall discussions of cancer: the average October day generates a 37 percent higher volume of digital content than seen on average. Of note, the data analysis performed for this report began just after Ange- lina Jolie announced that, because of genetic findings that put her at substantial risk of breast cancer, she had had a double mastectomy, a news item that had an immediate impact on consumer behavior; Goo- gle reported a spike in searches for “mastectomy.” The Wikipedia page for “mastectomy” received 250,000 views – more than the annual inci- dence rate for breast cancer – and online conversation volume for both “mastectomy” and “BRCA” (the gene in question) spiked in the aftermath of the revelation. The Jolie-related interest stemmed not from her celebrity alone; pop cul- ture-related spikes in other cancer types, described below, make it clear that high volume does not automati- cally prompt more sophisticated ed- ucational efforts. The specificity of Jolie’s announcement – made in the New York Times – along with com- mentary from every major advocacy group, helped push readers to find out more. Breast Cancer
  7. 7. 8 Social Oncology Report Lung cancer, despite great strides made in prevention over the past decades, remains the largest cancer killer, a fact that has helped drive in- creasing social engagement. That ad- vocacy may explain why lung cancer conversations grew, albeit modestly, in a year in which other large cancers saw less digital traction. As with breast cancer – though to a smaller extent – Lung Cancer Aware- ness Month created a clear and sus- tained rise in conversations, with the average daily volume up 36 percent in November compared with the year as a whole. But most fascinatingly, the largest spikes in lung cancer – tripling the usual volume – came on Sept. 29 and Sept. 30. Those were the two days following the series finale for Breaking Bad, a five-season televi- sion show that followed how a lung cancer diagnosis helped transform a high-school chemistry teacher named Walter White into an illegal drug kingpin over the course of a two-year period. The Walter White effect shows both the peril and the potential of the dig- ital conversation. It is hard to argue that the character’s struggle with lung cancer was anything other than a plot device, with little time spent discussing the nature of the disease, suggesting that the spike in attention did little to boost education around lung cancer (indeed, a look at Wiki- pedia traffic suggests that there was not a meaningful increase in search- es for the topic). However, the interest in Walter White may have provided an opening for organizations to opportunistically leverage that attention to direct at- tention to the issue, an opportunity that – unlike the Jolie case – appeared to go unexplored. Lung Cancer
  8. 8. 9 Social Oncology Report Prostate cancer, the fourth-largest cancer killer in the United States, ranked third in conversation volume. Like breast cancer, there was a mod- est decline in tweets, blog posts and forum discussion but a small increase in news coverage. As in other cancer types, prostate cancer awareness drove conversations – digital mentions in November, during Prostate Cancer Awareness Month, were up 32 percent, on average – but prostate cancer was not immune from the impact of cancer news in the popular culture. The highest-volume day for the term fell on May 2, 2014, the day that news broke that the em- battled owner of the Los Angeles Clippers, Donald Sterling, had prostate cancer. Sterling was already in the news because of concerns over racist statements; the prostate cancer news was carried along as part of the ex- isting interest in Sterling. Like the fictitious Walter White, it’s unlikely that the Sterling news cycle had an impact on consumer education; there’s no evidence that search behav- ior was impacted by the news coverage. Prostate Cancer
  9. 9. 10 Social Oncology Report No other major cancer has as broad a gap between the number of annual deaths and the conversation volume as pancreatic cancer. Though nearly as many die from pancreatic cancer as breast cancer, pancreatic cancer generat- ed a low volume of conversation, especially in more social environments such as forums and Twitter: less than one-tenth of breast cancer and less than any other leading cancer killer. That said, it’s clear that ongoing awareness efforts are making a dent. Like every other cancer examined in detail, volume rose (by 27 percent) during No- vember, Pancreatic Cancer Awareness Month. And an even more pronounced long-term spike occurred around the American Association for Cancer Re- search annual meeting in early April, where a Stand Up to Cancer “Pancreatic Cancer Dream Team” of researchers was announced. Pancreatic Cancer
  10. 10. 11 Social Oncology Report Attention paid to colon cancer – online and off – has varied historically based on the direct awareness activities. Celebrity attention around colonoscopies has generate attention in the past, most notably with Katie Couric in 2000, for- mer NBA All-Star Charles Barkley in 2008 and morning show host Harry Smith in 2010. But more recent awareness efforts – including participation by Meryl Streep and Terrance Howard -- has failed to have the same media resonance. That said, Colon Cancer Awareness Month, promoted heavily each year by the Centers for Disease Control and Prevention, does have a major impact in tem- porarily boosting conversations. Volume more than doubles in March. That, in part, has helped colon cancer discussion rise year-over-year in the absence of clear catalysts. Colon Cancer
  11. 11. 12 Social Oncology Report The use of social media in health care is growing, but little attention has been paid to physician use of so- cial tools, in part because of a per- ception that health care profession- als use technology at a lower rate than the general public. In an effort to address this gap, the Social Oncol- ogy Project 2014 targeted physician conversations for inclusion. For the ASCO annual meeting, W2O Group performed an analysis of all tweets referencing cancer by U.S. physicians during 2013. This endeav- or was based on MDigitalLife, the first and only database that maps physicians’ digital properties to their official government registries. This has allowed the aggregation and analysis of all cancer-related tweets generated by American physicians. The effort, made public by ASCO earlier this month, found 82,383 cancer-related tweets from 4,155 different U.S. physicians. Though year-over-year history data was not available, regression analysis showed that the volume of cancer-re- lated tweets grew approximately 20 percent over the course of 2013, with greater volume seen in May and June, around the ASCO 2013 Annual Meeting and around October, Breast Cancer Awareness Month. The discussion was dominated by mentions of breast cancer, which comprised 26 percent of all tweets about cancer, followed by prostate cancer at 10 percent, lung cancer at 8 percent and skin cancer at 5 per- cent. While this breakdown match- es the conversation mix among all Twitter users, it is nonetheless note- worthy that physician discussion of tumor types – like the overall discus- sion highlighted earlier – does not correlate with either the number of deaths or the incidence of various cancer types. The correlation between topic of broad interest and the topics of in- terest to physicians is worthy of additional scrutiny. While not all areas of interest to physicians are mirrored in the larger dataset – the ASCO meeting is a hurricane of physician discussion, but a breeze when looked in the broader context of some 12 million tweets – aware- ness months remain a key draw for both narrow and expansive online populations: there is a clear spike in the physician dataset during Breast Cancer Awareness month. A similar jump occurs for daily prostate cancer tweets from physicians during Pros- tate Cancer Awareness Month, where conversations are almost 30 percent higher than normal. Most tweets on cancer-related topics came from medical oncologists, who accounted for 23 percent of all cancer tweets, followed by surgeons (13 percent), internists (8 percent) and family phy- sicians (6 percent). While oncologists and surgeons were the specialties most frequent posting cancer-relat- ed tweets, they nonetheless consti- tuted a minority of doctors tweeting about cancer, underscoring broad interest, across medical disciplines, in oncology. Physician Conversations Broad and Growing
  12. 12. 13 Social Oncology Report In July 2013, Matthew Katz, a radiation oncologist in Massachusetts, made an ambitious proposal via ASCO’s blog, ASCO Connection. Noting the success of #BCSM – a community that gathers weekly on Twitter to discuss breast cancer – Katz proposed a folksonomy that would standardize the hashtags for cancer-type specific conversa- tions, making it easier for communi- ties to form. Katz wrote: This evolution is already hap- pening, but not in an organized way. #btsm has now been creat- ed, with a focus on brain tumors. It can happen for other cancers, too. Much of it is patient-driv- en, but an increasing number of doctors, nurses, hospitals, pro- fessional societies, and more are now online as well. But the motives may vary from asking for help to promoting clinical trials, yourself, or products. Given the success of #BCSM, a phe- nomenon examined in the Social On- cology Project 2013, Katz’s proposal was seized upon by many of his fellow physicians; 25 comments to his origi- nal post underscored the interest. Replicating the success of #BCSM, now almost three years in the making, requires more than simply announcing a hashtag, but after Katz’s piece was published, a number of doctors – in partnership with patients, caregivers, health professionals and others – be- gan more aggressive use of Katz’s pro- posed framework to build out hashtag communities. Like #BCSM, these communities gen- erally used the hashtag in two ways: as part of regularly scheduled “tweet- chats” and as a way of signaling items of interest to that community. Katz proposed 20 hashtags. Some, such as #BCSM and #BTSM (for brain tumors), were already in use. Most were not. Nearly one year later, however, several vibrant new communities have emerged. #LCSM, dedicated to the na- tion’s largest cancer killer, didn’t exist when Katz published his piece; nearly 28,000 #LCSM tweets have appeared since. #MMSM, dedicated to myeloma, went from 0 to 5077. #CRCSM, for co- lon cancer, broke 2,000 tweets in less than a year. While social media is often portrayed as a leaderless and organic way to con- nect, the success of certain hashtags proposed by Katz (and the failure of others – even in prevalent cancers) underscores the importance of indi- viduals in coalescing a group around a hashtag. For lung cancer, Deana Hen- drickson -- @lungcancerfaces on Twit- ter – has been a driving force. Myeloma conversations have been driven by Dr. Michael Thompson (@MTMDPHD). The cancer hashtag remains a nascent concept, and it remains to be seen how this method of communication will grow or adapt as new technologies – and new needs – come on board. The #BCSM group has already branched out with a website and a fuller suite of offerings, even as the use of the hashtag has plateaued. Hashtags “ “
  13. 13. 14 Social Oncology Report Last year’s meeting of the American Society of Clinical Oncology was big. The volume of presentations was big, with 4,500 pieces of research published. The attendee list was big; 30,000 people – and 25,000 profes- sionals – passed through the doors of McCormick Place (which is also big; no convention space in North Ameri- ca boasts more square feet). The ex- hibits were big. The plenary hall was big. Against this backdrop, it is natural that the use of social media was big. When the curtain dropped on the event, the #ASCO13 “hashtag” that ASCO attendees and followers used when discussing the meeting online had been used more than 21,000 times. That’s a 52 percent rise over 2012 (which was itself a 43 percent rise from 2011). And more impressively, the number of participants in the discussion was far broader than ever before. More than 4,300 different handles tweet- ed out the hashtag, 70 percent more than used the #ASCO12 hashtag. The content of social media around the ASCO meeting differs fundamen- tally from other coverage generated at the meeting. Mainstream cover- age remained relatively limited -- The New York Times printed four stories from the meeting, USA Today pub- lished three and The Wall Street Jour- nal ran two– and focused, with five of those nine stories were about new immunotherapies. The online story, however, was quite different, with fewer obvious hot top- ics. Though melanoma drove more than half of national newspaper sto- ries, use of the #melanoma hashtag (506 mentions) lagged behind the use of the #lungcancer hashtag (583 mentions) and the #breastcancer hashtag (530 mentions). #ASCO13 Conversations at the American Society of Clinical Oncology Meeting
  14. 14. 15 Social Oncology Report It’s also important to consider the sources that physicians relied upon in com- munication, which often tended to differ from sources with wide distribution. Of those 21,000 tweets, half contained links to other content. They weren’t tweeting out consumer-friendly links: the most popular site for links was the ASCO abstract page, where the nitty-gritty scientific details lie. – another ASCO page – ranked number 2. Onclive, an online trade outlet, was number 3. That’s not to say that there isn’t interaction between “mainstream” sources and the online community around ASCO. The most retweeted item tagged with #ASCO13 was from a journalist (from Reuters’ Debra Sherman, linking to a brave column about her own fight with lung cancer; Sherman – who wrote with insight, power and humor -- died last month). Sherman had the third most popular tweet as well, and reporters from Forbes, USA Today and The Street all also cracked the top 10 tweeters.
  15. 15. 16 Social Oncology Report The data in this report came from a variety of sources, indicated as applicable. The bulk of the information was pulled from Sysomos and analyzed by the W2O Group authors. The analysis was performed over the week of March 12, restricted to con- versations in the United States and generally dealt with one year of data. Some select Twitter information, particularly pertaining to the hashtag use around ASCO meetings, came from The data in “Physician Conversations” was generated from W2O Group’s MDigitalLife database during calendar year 2013. That proprietary tool tracks matched Twitter handles with physicians’ NPI (National Provider Identifier) numbers. This serves two purposes: first, it verifies that the doctors in the database are, indeed, validated physicians. Second, it also allows analysis not only of tweets, but also data linked to the NPIN, such as specialty, location, referral history and prescrib- ing history. MDigitalLife is the first (and so far, the only) database tracking doctors’ “digital footprint” and tethering it to an official registry. For more information on any of the content contained in this report, please contact Brian Reid at A Note on Data Sources