#LCSM_17Dec2015_12222015_VG

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#LCMSSocial Media Analytics

Monitoring Period December 17th, 2015

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Background:

• The #LCSM community was founded on Twitter to foster social media collaboration among lung cancer patients, caregivers, family members, advocates, healthcare providers, researchers and charities. Its focus is to use social media in an innovative manner to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.

• The following analysis takes a closer look at the #LCSM chat that was held on Dec 17th. The chat topic was “Reflecting on 2015, Projecting 2016 for the Lung Cancer Community” and was moderated by Dr. Jack West.

• The chat covered the following topics/ questions: T1: What do you feel were the key highlights for the lung cancer community in 2015? T2: What are the leading challenges the lung cancer community still faces for the near future? T3: What are your predictions for realistic next advances in lung cancer in 2016? T4: Dreaming big, what’s on your wish list of what you’d love to see for the lung cancer community

next year?

Objective:

• To analyze the #LCSM chat that took place on Dec 17th to gain insights on participants and their discussion points.

Data Source - Symplur

Background & Objective


Topic 1 Topic 2 Topic 3 Topic 4

8197

46

70

26 25 18 23

Share of Voice – By Topic

Count of Chat Posts Count of Chat Participants

Total number of posts ~300Total number of participants 37


Share of Voice by Topic

Notes:• The total number of #LCSM chat posts that were downloaded from Symplur are ~ 600 posts. Of those, ~ 300 mentioned

one or more of the four topics.• The total number of chat participants were 54; of which 37 participants posted on one or more of the four topics.• The chat covered the following topics/ questions:

T1: What do you feel were the key highlights for the lung cancer community in 2015? T2: What are the leading challenges the lung cancer community still faces for the near future? T3: What are your predictions for realistic next advances in lung cancer in 2016? T4: Dreaming big, what’s on your wish list of what you’d love to see for the lung cancer community next year?


Key Insights from Posts by Topic


Topic 1

n=81

Key Insights By Topic - Topic 1T1: What do you feel were the key highlights for the lung cancer community in 2015?


Key Insights:• Immunotherapy was the major discussed topic; it was mentioned in approximately one third of T1 posts.

• “@TimAllenMDJD T1. Great promise with immunotherapy, but early to use the C word. Still a major leap forward. #lcsm ” - Matthew Katz, MD

• “And you NEVER say game-changer! MT @JackWestMD: T1: I must say that immunotherapy for LC has been a game-changer #lcsm ” - LungCancerFaces

• Approval of new drugs in 2015 was also mentioned in 15% of T1 posts without mention of brand names.• “4 new drugs for LC approved since Sept! RT @drCarterHarris: T1. New drugs approved my #lcsm”- Jack West, MD • “T1: Immunotherapy, new treatments/options for squamous and sclc, egfr, many new programs for people impacted

by #lungcancer #lcsm” – brownbeansprout


Topic 2

n=97


Key Insights:Clinical trial was the most discussed topic as the audience felt that there is lack of awareness about Clinical trials• “T2: Improving awareness of, access to, and navigation for appropriate clinical trials #lcsm” - jfreemandaily• “T2. Access is critical. To trials, to expertise, to meds. #lcsm” – Brendonstiles MD

The Stigma of being a LC patient was the leading challenge discussed • “T2 Getting rid of the stigma. #lcsm” – johnlpender (Stage IV Lung Cancer fighter)• “T2. Agree with all of you that stigma is an issue, but we need to get over it and create our own story. Only that will erase it. #lcsm” –

Brendonstiles MD• “T2. Stigma continues. Making headway. But cannot ignore the presence of stigma and the need to address it and support our

patients #lcsm” – Dr. CarterHarris

Participants expecting for molecular testing in LC and hoping improved HCP education in molecular testing for better results• “I see this improving quickly. MT @JFreemanDaily: T2: Establishing molec testing for EGFR, ALK, ROS1 as automatic part of LC

diagnosis #lcsm” – Jack West MD• “T2: Improve HCP education about molecular/genomic testing and provide access to "expert" opinions on same #lcsm” - jfreemandaily

Key Insights By Topic - Topic 2T2: What are the leading challenges the lung cancer community still faces for the near future?


Topic 3

n=46


Key Insights By Topic - Topic 3T3: What are your predictions for realistic next advances in lung cancer in 2016?

Key Insights:Participants expecting collaboration of advocacy and research funding groups for common causes• “T3: advocacy groups develop collaborative plan to tackle all #lungcancer challenges cooperatively. #lcsm” - jfreemandaily• “T3. I would like to see consolidation of advocacy and research funding groups with respect to common causes. #lcsm ” – Brendonstiles

MD

More funds and more attention towards LC patients • “T3. Increased funding. hope this sentiment is not just wishful thinking! #lcsm” – Dr.Carter harris• “T3: 'mo money. And more attention. #lcsm” – louisianagirl91 (Patient Advocate)


Topic 4

n=70


Key Insights By Topic - Topic 4T4: Dreaming big, what’s on your wish list of what you’d love to see for the lung cancer community next year?

Key Insights:Participants expecting support and advances in Lung cancer“T4. Would love more attention in research to inherited risk. Define risk in nonsmokers, but also susceptibility to tobacco. #lcsm” –Brendonstiles MD“T4 Complete and total remission. #lcsm” – johnlpender“T4: that we find lung cancer earlier, have more people in trials & more survivors living longer #lcsm” - louisianagirl91“T4: Collaborative partnerships between healthcare providers, patients, caregivers, and advocates revolutionizes healthcare for all #lcsm” - JFreemanDaily

Expecting more funds for lung cancer patients“T4. Funding commensurate with the level of other cancers. #lcsm #EndTheStigma” – Dr. Carterharris“T4. Funding, funding, funding. #lcsm” - Brendonstiles MD


Top Twitter Handles by number of Tweets/ Retweets


Topic 1 – Top 5 Twitter Handles by number of Tweets

I worked in college sports until Mom died from lung cancer. Now I focus on nonprofits & healthcare advocacy. #LCSM #Cowboys#Sujags

“T1: not only new drugs, but more patient & family engagement! LOTS of new advocates! #lcsm ”

Laronica Conway (@louisianagirl91) Tweets=10 (RT=9) Followers=1,200

Thoracic surgeon @WeillCornell and @nyphospital. Cancer researcher. Patient advocate.

“T1. Immunotherapy leading charge without doubt. Has generated incredible HOPE. #lcsm ”

Tweets=8 (RT=0) Followers=1,600

Change the conversation around Lung Cancer: no stigma, fair research funding, early detection, media attention, survival.

“And you NEVER say game-changer! MT @JackWestMD: T1: I must say that immunotherapy for LC has been a game-changer #lcsm”


H. Jack West, MD (@JackWestMD)Med Onc, Founder/Prez of cancer education nonprofit @CancerGRACE, Web Editor of @JAMAOnc.

“T1: I'm cautious about saying "cure" w/immunotherapy, but it's great that we can even begin to ask that. #lcsm”

Tweets=7 (RT=1) Followers= 8,500

Timothy Craig Allen (@TimAllenMDJD)Pulmonary Pathologist/B.S.1980 Texas A&M University/M.D. 1984 Baylor College of Medicine/J.D. with honors 1998

“RT @JFreemanDaily: T1: Immunotherapy showing good results for squamous NSCLC, SCLC and mesothelioma--first new drug in years. #lcsm”


Brendon Stiles (@BrendonStilesMD)

Faces of Lung Cancer (@LungCancerFaces)

Patient Advocate

Patient Advocate




“THIS>>RT @BrendonStilesMD T2. We need more money from NIH and Dept. of Defense. In a bad way. #lcsm ”


Janet Freeman Daily (@JFreemanDaily)Writer, speaker, science geek, lung cancer patient/advocate. #LCSM Chat co-mod, 2014 #MedX ePatient Scholar

“T2: Creating patient decision aids to help with treatment options, use of palliative care for symptoms management, etc. #lcsm”




“T2: As important as immunotherapy is, we need to figure out WHICH pts are likely to benefit. #lcsm”



“So important RT @JFreemanDaily: T2: Improve HCP education about molecular/genomic testing and provide access to "expert" opinions #lcsm”

Tweets=7 (RT=0) Followers=1,600Brendon Stiles (@BrendonStilesMD)


“T2: Underfunding on both private and federal levels, which goes hand in hand with stigma. #lcsm ”

Tweets=7 (RT=2) Followers=6,400Faces of Lung Cancer (@LungCancerFaces)

Patient Advocate

Patient Advocate

Patient Advocate





“T3: I think we'll see more data supporting move of immuno-onc Rx into 1st line, but only for defined subset w/PD-L1 pos. #lcsm”



“I thought 'mo money brings 'mo problems? Let's try it and see. RT @louisianagirl91: T3: 'mo money. And more attention. #lcsm ”

Tweets=5 (RT=0) Followers=1,600Brendon Stiles (@BrendonStilesMD)


“These are the keys to everything else, IMO RT @louisianagirl91: T3: 'mo money. And more attention. #lcsm”

Tweets=5 (RT=2) Followers=6,400Faces of Lung Cancer (@LungCancerFaces)


“RT @drCarterHarris T3. Increased funding...hope this sentiment is not just wishful thinking! #lcsm”



“T3: advocacy groups develop collaborative plan to tackle all #lungcancer challenges cooperatively. #lcsm”


Patient Advocate

Patient Advocate

Patient Advocate





“T4: that we find lung cancer earlier, have more people in trials & more survivors living longer #lcsm”

Laronica Conway (@louisianagirl91) Followers=1,200


“T4. 'Mo money, 'mo actionable targets. Need big push for mutation testing and companion basket trials. #lcsm”



“I'd love that, too. So glad @iaslc partnered with advocates, pts RT @BrendonStilesMD: T4. More patients and advocates at meetings. #lcsm”



“T4: I'd say responses to Rx for stage IV lasting long enough that we rethink truism that we can't talk about cure in this setting. #lcsm”


Brendon Stiles (@BrendonStilesMD)

Faces of Lung Cancer (@LungCancerFaces)


“T4: Collaborative partnerships between healthcare providers, patients, caregivers, and advocates revolutionizes healthcare for all #lcsm”


Patient Advocate

Patient Advocate

Patient Advocate


Tweets=12 (RT=11)

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About #LCSM

Deana Hendrickson (@LungCancerFaces on Twitter) discovered the #BCSM community for breast cancer while exploring Twitter for lung cancer advocacy. She thought an #LCSM hashtag would be useful for Lung Cancer Social Media, so she searched to see if anyone was using it. She found Dr. Matt Katz (@subatomicdoc) had used #LCSM on a few tweets, and they chatted about the hashtag using Twitter’s direct message feature. The two of them decided to increase #LCSM use to raise visibility of lung cancer on Twitter. Deana was also communicating via Twitter direct message with Dr. David Tom Cooke (@UCD_ChestHealth) about trying to start an #LCSM chat. As the #LCSM hashtag started to appear on Twitter more often, Dr. Jack West (@JackWestMD) contacted Deana and offered to moderate an #LCSM chat. Laronica Conway (@louisianagirl91) and Deana also connected on Twitter, and discovered they shared the same vision for #LCSM. Amidst all these connections, #LCSM chat became a reality.

Appendix

Dr. West (@JackWestMD) is a medical oncologist who cares for cancer patients directly at Swedish Cancer Institute in Seattle and also heads multiple national and regional cancer trials. He founded the nonprofit Global Resource for Advancing Cancer Education (GRACE) in 2007 to provide timely information directly to patients and caregivers. He also moderates #LCSM chat.

About the Moderator

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Thank You

#LCSM_17Dec2015_12222015_VG

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