A DIVISION OF W2O GROUP

The Social Oncology Report

2016

BRIAN REID WITH GREG MATTHEWS & KAYLA RODRIGUEZ

TABLE OF CONTENTS

Dedication 3

Introduction 4

Part One: The Communities 5

#BCSM 6

#LCSM 11

#MMSM 15

#PCSM AND #GYNCSM 17

CONCLUSION 19

Part Two: Hot Topics 20

VALUE 20

IMMUNOTHERAPY FOR ONCOLOGY 21

DATA SOURCES AND OTHER DISCLOSURES 22

LOOKING AHEAD — ELAINE SCHATTNER 23

LOOKING AHEAD — SAM WATSON 24

The Social Oncology Project’s 2016 report is dedicated to Jody Schoger. Jody died this month, but her legacy in social oncology is still very much with us.

There is a strong argument to be made that the very idea of “social oncology” would not exist—or would not be nearly as mature an idea—if not for Jody. Officially, she will go down as one of the founding members of #BCSM, the hashtag-based breast cancer community, but her role went far beyond that. She was, 24 hours a day, 7 days a week, an ambassador for a visionary concept: that information and support should never be more than a click away.

The idea of using the internet to supply information and support for the cancer community isn’t novel. Type “breast cancer” into Google, and you have your choice of 116 million different links. What Jody did—along with surgeon Deanna Attai and fellow patient-advocate Alicia Staley—was create a community. Not an organization. Not an institution.

In retrospect, the success of #BCSM and similar movements inspired by the work of Jody and others seems inevitable. But the reality is that the cancer community, even the breast cancer community, is atomized. There was not necessarily a single community waiting to be united: the medical issues confronting a patient with a DCIS diagnosis are fundamentally different from those involved in battling metastatic disease or related to adjuvant care.

What makes social oncology powerful—and what made Jody’s role in #BCSM so critical—is the way that a small number of individuals can bridge those gaps, encourage a kind of mentorship and emphasize common goals.

In the pages to come, the Social Oncology Project will show that much of the magic of the oncology ecosystem comes from the way that certain individuals serve as connecting hubs between different communities, bridging patients with physicians, for example, or early-stage patients with those who have lived with cancer for years.

Jody contributed much of that magic, and for that, we are forever grateful.

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DEDICATION

INTRODUCTION

This is the fourth annual edition of the Social Oncology Project. In the past, this report has sought to take an expansive view of cancer conversations online, looking across the 200 billion or so tweets—and hundreds of millions of other pieces of online content—created each year to assess how robust the conversation around cancer has been.

While that has generated interesting findings and proven that cancer is a well-established topic with tendrils into how we talk about not just medicine but pop culture and sports, conclusions from those aggregate numbers became harder and harder to draw. As with so much else online, it is difficult to tell signal from noise.

That is why, last year, the focus of the Social Oncology Project shifted to a narrow look at a powerful audience: physicians. Using our proprietary database of doctors whose Twitter account had been validated against their National Provider ID, we were able to capture a detailed snapshot of how health professionals spoke to each other. That data, published by the American Society of Clinical Oncology in advance of its annual meeting last year, established a critical baseline for Twitter use among that audience.

This year, we continue that emphasis on communities, expanding beyond physicians to look at a broader ecosystem that includes doctors, patients, media and advocates (both advocacy groups and those that, while not patients, play the role of advocate for groups or individuals battling cancer). This has yielded a richer look at the landscape than examining physicians alone, yet addresses many of the problems that come from sifting through billions of pieces of low-value content.

We also looked specifically at hashtag communities, rather than a full-text dredging of our ecosystem, because those groups tend to focus more intently on two-way conversation, rather than one-way broadcast. While this narrows focus to some extent, it also captures a precise and uniquely influential part of the online health universe. Our efforts here tried to span a range of different communities, from the mature (#BCSM in breast cancer) to the established (#LCSM in lung cancer) to the fast-growing (#MMSM in multiple myeloma) to more nascent communities (#PCSM in prostate cancer or #GYNCSM for gynecological cancers).

What we found was that Twitter—still the main venue for public, online discussion—has become a vehicle to propagate certain information via sharing of links. (Twitter itself is acknowledging the centrality of link-sharing; the service said it will soon stop counting URLs against the 140-character limit.) As a consequence, our effort in 2016 has been to look at which groups are sharing which kinds of links.

In some senses, all groups shared similar content. There was a clear interest in education—no cat videos or Reddit memes—but the sources each group shared varied and demonstrated the different veins of information each group tapped. Doctors were far more likely to share peer-reviewed publications, patients and advocates preferred well-established consumer information sources and video content, media often referenced news stories. These patterns were not absolute, however: everyone in the community consumed information from a wide range of places, and the only consistent similarity was the high quality of the content.

The analysis of those communities, how they share information and what information they share, makes up Part One of this report and constitutes the bulk of the 2016 Social Oncology Project. However, as in years past, we also performed some exploratory analyses. This year, we examined conversations around two trending topics, immunotherapy in oncology and the value of prescription drugs, in an effort to better understand how those topics were discussed last year.

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This year’s Social Oncology Project is built around hashtag communities, in part because of increasing interest in the academic community in leveraging social media in that way. Last year, at the ASCO meeting, the most-shared abstract link was to radiation oncologist Matthew Katz’s poster on “Disease-specific hashtags for online communication about cancer care.”

That research—which used a different methodology than our approach—looked at 25 different hashtags and found that use was skyrocketing, with an interesting blend of users: 11 percent patients, 20 percent doctors, 32 percent “individuals,” and 30 percent health care organizations.

Given the increasing use of cancer-specific hashtags as an organizing principle in oncology, we analyzed six hashtag communities of particular interest via our MDigitalLife analytics suite. MDigitalLife was originally a database of social media profiles for doctors in which accounts was linked to a verified National Provider Identification, ensuring the doctors in the database were validated. To that core database, W2O Group has added profiles for patients, advocates, health care professionals, media, international physicians, and others. That dataset was used to build the analyses in this year’s report.

25

11%PATIENTS

HASHTAGS

20%DOCTORS

32%“INDIVIDUALS” 30%

HEALTHCAREORGANIZATIONS

PART ONE: THE COMMUNITIES

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There are few digital success stories in health as well-known as #BCSM, a collaboration between three women in the summer of 2011 that filled a need so compellingly that USA Today profiled the group just over a year later. While many online efforts lose their power or alter their focus over time, #BCSM has remained a model for the diverse online health community that draws together groups that rarely have consistent, in-depth, real-world interaction.

In the past, breast cancer conversations have spiked during October—the sometimes-celebrated, sometimes reviled pink-themed awareness month for breast cancer—though the consistency of the #BCSM group showed that boosting awareness and sharing information is not a 30-day sprint for those most heavily invested in the breast cancer community.

Indeed, when looking across the four groups assessed, the largest spikes in conversation all appeared outside of October. For patients and advocates, the highest-volume day came in March, during a weekly tweetchat focused on metastatic disease, a stubborn element of the disease that—as participants made clear—often gets forgotten during awareness pushes. Physicians weighed in most frequently during a July 28 chat on recovery and breast reconstruction. And media, which had the lowest participation in #BCSM of the four groups examined, were most engaged around topics surrounding the annual San Antonio Breast Cancer Symposium.

ALICIASTALEY

DR.DEANNA

ATTAI

PART ONE: THE COMMUNITIES

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Volume in #BCSM was driven by patients: 25,000 tweets came from those tagged in our database as patients, followed by another 13,600 from those considered advocates. Doctors contributed 12,000 tweets, while media generated 1,600 tweets: just 3 percent of the total.

The other critical element is understanding who is driving the conversation and how the community is connected to each other. A single voice, no matter how much content is created, has a limited range without amplification. As a consequence, we also looked for individuals who were at the center of the group. Unsurprisingly, the two largest points of connection were two of the group’s founders, Alicia Staley and Dr. Deanna Attai. Another half-dozen individuals or so also serve as hubs in this network, notably Nicki Durlester, Lisa Guzzardi, Dr. Matthew Katz, Dr. Elaine Schattner, AnneMarie Ciccarella and Karen Lazarovitz.

PART ONE: THE COMMUNITIES

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Knowing who is talking provides only a limited window into the group, however. With more than 50,000 tweets in aggregate, the types of information shared by #BCSM offers a critical look at that way knowledge moves through an ecosystem.

Here, the big winner is YouTube: more than 100 different patients and more than 100 different advocates linked to the video-sharing site at least once during a #BCSM. And while media rarely shared videos, 53 doctors referenced YouTube in tweets, making it the seventh-most-cited domain for physicians, outstripping even the New York Times.

Two other outlets showed up repeatedly. The National Cancer Institute’s Cancer.Gov was a top 10-most-linked domain for advocates (#3), doctors (#3) and patients (#10). And ASCO Post, the trade publication owned by ASCO, was popular with all four of the groups we tracked, coming in at #5 for advocates, #1 for doctors, #2 for media and #6 for patients.

The ASCO Post mentions were curious: while a high-quality trusted outlet, it is a source known more for sober, clinical reviews of research, not fuel for educational efforts. The popularity appears to be linked to the publication’s use of the #BCSM hashtag. While “#BCSM” is usually used during the weekly tweetchats, it is also used, less frequently, for members of the community to flag news of interest, regardless of whether it appears during the chat itself. ASCO Post took advantage of that hashtag use case, adding #BCSM to many of the links it sent to its stories. While such an approach is novel within the #BCSM community, it also had an effect, generating a high number of retweets from within the community.

Most cited domains Total Count Unique Users

youtube.com

bcsm.org

cancer.gov

blog.dana-farber.org

ascopost.com

huffingtonpost.com

curetoday.com

ncbi.nlm.nih.gov

trialreach.com

medivizor.com

ADVOCACY

328

482

130

122

377

158

76

184

103

108

113

86

54

50

44

37

36

32

30

17

PART ONE: THE COMMUNITIES

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Most cited domains Total Count Unique Users

bcsm.org

ascopost.com

mdanderson.org

journals.lww.com

onclive.com

healthnewsreview.org

abstracts.asco.org

curetoday.com

practiceupdate.com

nursing.onclive.com

MEDIA

39

22

32

51

44

34

39

38

113

61

13

13

9

8

6

6

4

4

3

3

ascopost.com

bcsm.org

cancer.gov

mdanderson.org

ncbi.nlm.nih.gov

oncology.jamanetwork.com

youtube.com

nytimes.com

jco.ascopubs.org

blog.dana-farber.org

PHYSICIANS

387

548

121

105

173

118

101

64

86

63

127

78

68

63

62

56

53

47

43

43

PART ONE: THE COMMUNITIES

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Most cited domains Total Count Unique Users

youtube.com

bcsm.org

trialreach.com

huffingtonpost.com

facebook.com

ascopost.com

curetoday.com

blog.dana-farber.org

mdanderson.org

cancer.gov

PATIENTS

288

831

999

131

210

132

100

90

124

82

109

88

69

51

49

48

47

42

39

37

PART ONE: THE COMMUNITIES

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Though it does not always get the recognition of the breast cancer community, the #LCSM group has quietly grown to nearly the size of #BCSM, which is befitting of a group of online advocates battling the nation’s largest cancer killer: despite recent advances, deaths from lung cancer exceed the next three most common causes of cancer deaths combined. Yet funding still lags with National Cancer Institute dollars allocated to lung cancer half of those allocated for breast cancer.

There were 42,000-plus tweets tagged #LCSM, as—as in years past—volume did spike during Lung Cancer Awareness Month in November. But as we saw across other communities, awareness months and less and less important in conversations patients, doctors and advocates have among themselves, even if those milestones are important for educating the public more broadly. Unsurprisingly, there is no season for support, no season for information-sharing.

Media outlets on Twitter had low participation on #LCSM, with the highest-traffic day being July 31: World Lung Cancer Day. Others in the community had different areas of focus. The highest-volume day for doctors was Sept. 18, when the #LCSM group discussed the decision-making around the choice of surgery or radiation for treatment of early-stage lung cancer. Patient conversations peaked Aug. 28 during a discussion of the impact of social media, and

JANETFREEMAN-DAILY

DEANNAHENDRICKSON

PART ONE: THE COMMUNITIES

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advocacy interactions were highest Nov. 19, when the conversation turned to clinical research and personalized medicine.

The community is weighted toward advocates: 48 percent of tweets are tagged in our databases to advocates, the highest proportion of advocates in any of the communities we examined. There is a sound, if tragic, reason for this over-representation: because lung cancer remains a stubborn disease, many of those working to raise funds, boost awareness and improve care are those who have lost a loved one to the disease.

Like #BCSM, the lung cancer network online is built around three individuals who have an outsized impact on the network: Deanna Hendrickson, who runs @LungCancerFaces, Janet Freeman-Daily and Dr. Jack West. While others play an important role in the community, including Toni Tomalia, Jen Edwards and Laronica Conway, the ecosystem around lung cancer shows that though the web is often seen as a decentralized place, every community of size has a small number of super-connectors who are about to knit a group together.

PART ONE: THE COMMUNITIES

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Popular domains in lung cancer, like other cancer types, are focused on education: Cancer.Gov is a top-three domain for patients, physicians and advocates, and YouTube also ranks highly, making the top 10 for every group but media. Physicians tilted toward peer-reviewed journals: 35 doctors cited the New England Journal of Medicine’s webpage, 30 linked to the Journal of Clinical Oncology, 29 mentioned JAMA Oncology.

But it was sites that were likely to focus on people, not data, that seemed to enter into the most conversations. The patient-focused Cure Today was popular with patients and advocates, and advocacy websites also ranked highly for mentions, including that of the Lung Cancer Alliance, the Lung Cancer Project and Freeman-Daily’s Gray Connections blog.

Most cited domains Total Count Unique Users

lcsmchat.com

cancer.gov

youtube.com

facebook.com

curetoday.com

ascopost.com

lungcanceralliance.org

thelungcancerproject.org

patientpower.info

lungevity.org

ADVOCACY

1302

245

199

148

123

213

160

123

349

175

102

85

57

32

32

29

29

28

22

20

lcsmchat.com

oncology.jamanetwork.com

onclive.com

curetoday.com

targetedonc.com

mdanderson.org

MEDIA

23

8

50

33

25

9

9

7

5

4

4

4

PART ONE: THE COMMUNITIES

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Most cited domains Total Count Unique Users

thelancet.com

practiceupdate.com

cancernetwork.com

medscape.com

MEDIA CONT.

13

62

14

13

3

2

2

2

cancer.gov

ascopost.com

lcsmchat.com

nih.gov

nejm.org

jco.ascopubs.org

oncology.jamanetwork.com

youtube.com

journals.lww.com

cancergrace.org

PHYSICIANS

164

203

331

141

49

49

51

52

48

59

90

73

63

49

35

30

29

26

23

20

lcsmchat.com

curetoday.com

cancer.gov

youtube.com

fredhutch.org

grayconnections.net

facebook.com

ascopost.com

thelungcancerproject.org

lungevity.org

PATIENTS

418

141

86

101

52

65

47

53

54

55

58

41

41

27

22

21

19

18

17

16

PART ONE: THE COMMUNITIES

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The multiple myeloma hashtag, first flagged in our 2014 Social Oncology Project, is a testament to the idea that not all communities arise organically; #MMSM was specifically engineered and driven by a specific individual: Dr. Michael Thompson. The community didn’t exist before 2013 when Thompson, building on successes in other cancers and inspired by Katz’s “hashtag folksonomy,” launched the #MMSM hashtag and tweetchat.

Perhaps because it was launched and championed by a physician, #MMSM is the most physician-heavy community of any we surveyed; 46 percent of the tweets assessed were written by physicians. Just under 40 percent came from patients, and advocates and media made up only a small percentage of the conversation.

Discussions peaked in December, for all four of the communities evaluated. This was likely because of an encouraging one-two punch: interest turned to the most important meeting in the multiple myeloma world, the annual meeting of the American Society of Hematology, as well as to new weapons in the fight against the disease.

But the specific topics that generated the most discussions varied. The day of peak engagement for patients was actually Nov. 18, just ahead of the heavy news of December, during a discussion of the pros and cons of social media. Physicians and advocates had their busiest days during the

DR. MICHAELTHOMPSON

PART ONE: THE COMMUNITIES

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ASH meeting itself, focusing on clinical data.

When it came to information sources, narrowly tailored outlets again beat out national publications; myelomacrowd.org was hugely influential with patients and the most linked-to information source among patients and the second most linked-to by advocates (YouTube, the workhorse in so many communities, was #1). And even physicians, who tended to cite peer-reviewed outlets, frequently linked back to myelomacrowd.org pages.

The success of myelomacrowd.org, billed as “a site created for patients by patients” further supports an emerging reality in health communications: news mediated by peers is the news most likely to be shared. This works in different ways across groups; it’s no surprise that doctors tended to link back to content “by doctors for doctors”: medical journals. The journal Blood came in at #2 for doctors (after the NIH site), with JAMA Oncology at #4.

In terms of specific content, all groups showed a great deal of interest in clinical data and clinical trials; clinicaltrials.gov, the government’s clearinghouse for information on clinical trial enrollment, was a top-10 domain for doctors, patients and advocates. For doctors, three of the top four pieces of individual content were medical studies (ASCO Post—again, leveraging the hashtag strategy—was the other entry in the top four).

PART ONE: THE COMMUNITIES

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We also looked at the emergence of two smaller communities: the prostate cancer hashtag community and the gynecological cancer hashtag community. While not dissimilar in size, the two groups had fundamentally different makeups, demonstrating the range of different ways such communities can evolve.

Prostate cancer is a bit of an outlier, socially. First, of the five different cancer communities we examine here, prostate had the smallest amount of activity and the smallest number of participants. It also ranked fifth of five in terms of the percentage of the overall conversation that was centered around the hashtag.

The lower conversation level for prostate cancer runs contrary to the research funding allotted; only lung cancer and breast cancer receive more National Cancer Institute funding. Nor is the age of onset responsible for lower online participation rates; the median age of diagnosis of prostate cancer, though higher than breast cancer, is lower than that of lung cancer or myeloma.

The makeup of the hashtag community, too, is fundamentally different: patients make up only 6 percent of the conversation (in #BCSM, the figure is 48 percent; in lung cancer, it is 31 percent). Instead, the conversations mostly happen between advocates and physicians, giving the group a very different cast from others.

PART ONE: THE COMMUNITIES

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Still, the nature of conversations about prostate cancer is not radically different than that seen in other cancer types. Once again, YouTube shows up prominently as the most-cited domain by the advocates who dominate the conversation, and, once again, physician contributions are focused on sharing peer-reviewed content, with the majority of the top 10 domains linking back to medical journals or medical societies. And, once again, the aggressive hashtag use by ASCO Post showed up in the data, as ASCO Post was a top 10 source for all four of the communities assessed.

There is a natural tendency to assume that larger is better, and the smaller size of #PCSM should not be viewed as evidence of a lower-quality community. However, to the extent that either #PCSM or other nascent communities wish to grow, there may be lessons from other groups: fast-growing networks tend to have leadership that spans the health ecosystem, with a core of doctors and patients. This is the formula that helped launch #BCSM and has contributed to the growth of #LCSM, where patients and advocates partnered with Dr. Jack West to build an interconnected web.

In contrast to #PCSM, the hashtag community that has emerged among gynecological cancers had the second lowest percentage of doctor participants as compared with patients and advocates: just over one-in-three users of the hashtag were doctors (contributing about 20 percent of all tweets).

These different parts of the ecosystem had different peak moments: for doctors, the highest volume of conversations came during the ASCO meeting. Advocates, who constitute 35 percent of the community, were most engaged on Feb. 12 on the importance of non-medical care in dealing with gynecological cancers. Patients tweeted at the highest volume during a Sept. 10 chat about endometrial cancer.

The sources of information cited showed a slightly different pattern for the #GYNSM chat; while government resources ranked highly, as they did for other cancers, large cancer cancers were also frequently cited, a phenomenon that was more pronounced in the gynecological cancer space than in other communities. MD Anderson’s site was the most-cited source by physicians, the second-most-cited by patients and media, and the third-most-citied domain by advocates. Dana Farber’s blog also showed up in the lists for patients and advocates.

The increasing role of cancer centers in information dissipation is a trend worth watching. Both Dana Farber and MD Anderson were sources in #BCSM, though not as prominent as in the gynecological cancer community. Dana Farber showed up in our prostate cancer analysis for patients and advocates. The Fred Hutchinson Cancer Center was a top domain for patients in the #LCSM community. This suggests that cancer centers are a fourth leg of information-sharing sources, joining YouTube, government sites and peer-reviewed publications. Notably, news media appeared to have a more limited impact on conversations while ASCO Post, with its hashtag strategy, made frequent appearances in most-cited lists. The only other media to rank in the top 10 in any community in the five cancers assessed was the patient-focused Cure Today and the New York Times. The New York Times appeared once, as the #8 domain for physicians in breast cancer.

PART ONE: THE COMMUNITIES

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There is a great deal of heterogeneity between hashtag-driven social conversations about oncology, both among different cancer types as well as among different segments of the health care ecosystem. Still, the analysis that drove the Social Oncology Project this year also unearthed key similarities:

Being a part of a community is as important as sharing knowledge. Some of the most active tweetchats were almost meta, discussing how tweetchats—and other online support—could make a difference in the lives of patients and providers.

Hashtags, while capturing a somewhat narrow part of the conversation, nonetheless serve as powerful tools to both increase the volume of high-quality conversations and bring additional individuals into those conversations.

Information-sharing varies by sub-community, but not by cancer type. Patients focus on community-building and immediate clinical questions. Advocates are largely, though not exclusively, focused on awareness. Physicians are a gateway to medical information. And the media serve as bridge to news updates about advancements.

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CONCLUSION

Conversations about cancer are so broad that it is generally challenging to try to boil down a year of discussions into a small number of discrete themes, but 2015 was notable in that two topics came up repeatedly: the rise of immunotherapy as a clinical tool and increasing discussion about the value of pharmaceutical treatment for cancer.

Both topics are staggeringly complex, and looking at any single social post is unlikely to tell a complete story. In these cases, looking at aggregate conversations and the individuals leading them becomes critical.

As with our look at hashtag communities, we choose to look at immunotherapy and value through the lens of our four key sub-communities in the health care ecosystem: doctors, patients, advocates and media. But unlike an analysis based on hashtags, which allows for intentional communities to be created, our analysis of immunotherapy and value are driven by a diverse set of topical keywords.

As a consequence, we saw a conversation that was altogether different in its nature, focused less on sharing resources and more on sharing news. Such social conversations, unsurprisingly, tilted more toward members of the media, who—in hashtag communities—tend to be bit players.

VALUE At the ASCO meeting in June 2015, Dr. Leonard Saltz grabbed the spotlight during an oral presentation on cancer costs, detailing his mathematics and his view that “Cancer-drug prices are not related to the value of the drug.”

While Saltz’s presentation did not mark the beginning of a conversation about the value that cancer drugs bring to patients or society, it did turn up the volume of the discussion, in some ways laying the groundwork for more intense media scrutiny and lighting a fuse that would later explode when Turing Pharmaceuticals raised prices on a drug used in AIDS patients.

Looking at a graph of volume, the Saltz presentation shows up clearly; weekly volume around pricing was nearly three times higher than any other point during the year. And it wasn’t just doctors who reacted to the presentation. It marked the most active period of discussion of cancer drug prices for media and advocates as well. (Patient conversations—fueled by a #LCSM chat on the subject—hit their peak in August.) While one of the important takeaways from our analysis of hashtag communities was that the news media plays a secondary role in knowledge-sharing, the value debate showed the primacy of traditional press when it comes to flashpoint issues.

The Wall Street Journal—a Pulitzer Prize winner for a series of stories about drug pricing—was a top 3 source of information for all four groups assessed. Forbes.com was also a top 3 domain for doctors, patients, advocates and media. And peer-reviewed publications, which serve as a foundation for discussions around clinical benefit, were nearly invisible in the conversation around pricing, with the notable exception of JAMA Oncology, particularly a piece titled “Five Years of Cancer Drug Approvals,” which concluded that “current pricing models are not rational” and was widely shared.

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PART TWO: HOT TOPICS

With the dominance of new stories, there was little room for the other foundational sources seen in hashtag communities: government sites were nearly entirely absent, as were cancer centers. And YouTube, which plays such a universal role in education in other areas, was completely absent. If there are video assets that cogently summarize the debate over value, they are little shared by the elements of the cancer ecosystem that we track.

This may be because drug pricing, while of broad interest, is seen as an area where consumers have little control. Indeed, of the four individuals in our ecosystem who tweeted about price or value more than 40 times, all were physicians.

We will continue to track the evolution of this subject over time; continued interest in the topic, including a late-breaking ASCO 2016 session on the cost of cancer therapies, suggests that value has become a permanent part of the landscape. Historically, this has meant a change in the nature of the conversation, away from journalists writing the “first draft of history” to more detailed, data-driven examinations of the topic. It is our expectation that increasing attention to the medical literature—and perhaps even YouTube—will play a larger part of the discussion in the future.

IMMUNOTHERAPY FOR ONCOLOGY Historically, there has been a narrow range of options for attacking cancer: surgery, chemotherapy, radiation. Though many different molecules and many different modalities and variations have been used, the same basic toolbox was all physicians had when it came to treatment. In the last quarter-century, however, an additional set of approaches emerged: so-called targeted therapies that were designed to hit specific weak spots in cancer.

Over the past three years, yet another new front has opened against cancer: medicines that harness the power of the immune system to defeat cancer. This idea isn’t new. Dr. William Coley tried to stimulate the immune system to fight cancer as far back as 1891 and the Cancer Research Institute was founded in 1953 to fund immune-based approaches.

But it’s only recently that scientific obstacles have been identified and overcome, generating new options for patients and an entirely new set of conversations.

Still, scientific advances do not always translate into increased social dialogue. What made 2015 unique was that two sets of catalysts boosted the profile of the approach.

First, PBS’ March airing of “Cancer: The Emperor of All Maladies,” a three-part documentary by Ken Burns based on the book by Siddhartha Mukherjee, vaulted the subject into living rooms across the country, prompting patient and advocacy discussions to skyrocket.

Second, several pieces of featured research at the June ASCO meeting further boosted conversations among physicians and media.

Those two events, particularly “The Emperor of All Maladies,” served as a catalyst for information-sharing that went beyond the news. While the value discussion tended to stay within the confines of the news media, immunotherapy-related sharing tended to go to more primary sources.

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PART TWO: HOT TOPICS

Advocates and patients again flocked to YouTube to share videos on immunotherapy, though they also hit non-profits and cancer centers at high rates; the Cancer Research Institute made the top 4 most-shared domains for both patients and advocates, and properties from the National Cancer Institute, the American Association for Cancer Research, Dana Farber and MD Anderson were also prominent.

Physicians continued to rely on peer-reviewed publications: the New England Journal of Medicine, Nature and Science were all among the top 10 domains shared by doctors. In contrast, media tended to share news stories, with Forbes (#1) and the Wall Street Journal (#3) leading the way.

A review of the content generated suggests some of the directions that conversations about immunotherapy will take. First, patients often expressed interest in the real-world impact of the clinical findings, such as clinical trial enrollments. Second, we are seeing our two “hot topics” begin to collide as the implications of immunotherapy—including combination therapy—are seen via a financial lens.

DATA SOURCES AND OTHER DISCLOSURES

The data in this report came from a variety of sources. Most data was generated via W2O Group’s MDigitalLife unit, which uses a set of proprietary tools to analyze different parts of the health ecosystem. MDigitalLife builds a more precise snapshot of social conversations by validating social profiles. In the case of doctors, this means matching Twitter and other properties’ handles with physicians’ NPI (National Provider Identifier) numbers. That helps eliminate spam and the dangers associated with anonymous posting. Similar processes are used to validate media, patients, advocates and other communities.

MDigitalLife data was, in places, supplemented by data from Sysomos and other databases. All data covered the calendar year 2015.

W2O Group’s client base includes many companies involved in oncology, including pharmaceutical companies, diagnostic test makers, and non-profits operating in oncology.

For more information on any of the content contained in this report, please contact Brian Reid at breid@w2ogroup.com.

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PART TWO: HOT TOPICS

So what’s next for online communication about cancer? While hashtags and Tweet chats may have defined the last wave of social oncology, the next wave is likely to be more personalized, according to Elaine Schattner, who—as a physician who also works as a Forbes.com journalist—is uniquely situated within the online cancer ecosystem:

On social media, as in real life, many people – in their social groups, or

among colleagues – tend to nod their heads, to reiterate or rephrase

what’s popular, or what they think their employer or network will favor.

On Twitter, that ends up generating a lot of retweets within groups

of like-minded followers. But that kind of chatter doesn’t broaden

anyone’s knowledge base; it reinforces silos. It’s neither interesting, nor

helpful to science, or health, or anything really. I like to add new ideas

to a conversation. Otherwise, what’s the point?

I don’t often participate in Twitter chats. They provide great value

for many people, but don’t fit very well with my preferred mode

of engagement. I tend to have more one-on-one or small-group

conversations. When things move so quickly - as they do in Twitter

chats, it’s harder for me to be able to really get to know people and to

understand their perspectives.

— Dr. Elaine Schattner

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LOOKING AHEAD

The Social Oncology Project has demonstrated the power of information-sharing, but future social media applications in cancer will likely leverage much more than knowledge. The rise of crowdfunding on a personal level has the potential to re-write the rules of cancer survivorship, according to Sam Watson, who turned her experience as a young adult with cancer into the SAMFund, which provides grants to other young people dealing with cancer.

Crowdfunding is huge for our community. I was treated before social

media, but an earlier version of crowdfunding helped me. It was totally

lifesaving. When someone you know goes through an illness, the

impulse is to ask what you can do to help. But for people who are far

away, there hasn’t always been a good answer to the question “what

can I do?” That’s changing.

We still have to deal with how uncomfortable asking for money makes

people. But that isn’t something that the young adult with cancer has

to deal with. Setting up a campaign for someone is a great way for

friends or family to help out.

— Sam Watson

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LOOKING AHEAD