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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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.

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Total Deaths

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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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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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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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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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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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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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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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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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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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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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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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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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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

Health & Medicine

The 2014 MDigitalLIfe Social Oncology Project Report