The 2014 MDigitalLIfe Social Oncology Project Report
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Transcript of The 2014 MDigitalLIfe Social Oncology Project Report
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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.
OverviewThe Year of the Emergent Conversation
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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.
Tota
l Con
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atio
n Vo
lum
e
Total Deaths
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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
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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:
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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
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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
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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
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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
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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
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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
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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 ConversationsBroad and Growing
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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
“
“
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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).
#ASCO13Conversations at the American Society of Clinical Oncology Meeting
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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. Cancer.net –
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.
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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 Symplur.com.
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 [email protected].
A Note on Data Sources