www.ebmt.org#EBMT16

Social Media in Hematology / Oncology / BMT:

IntroductionMike Thompson, MD, PhD

@mtmdphd@Aurora_Cancer @Aurora_Health – Wisconsin, USA

Valencia, Spain, 4 April, 2016

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@TheEBMT Twitter wall is live @TweetBeam: http://goo.gl/oXou05  Tag your tweets with #EBMT16 !

#bmtsm = CTO hashtag

#EBMT16 #bmtsm

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• Intro – Mike Thompson, MD, PhD - @mtmdphd• How to Tweet – Navneet Majhail, MD - @BldCancerDoc• President EBMT - Mohamad Mohty, MD - @Mohty_EBMT• @TheEBMT Comm Coordinator - Mélanie Chaboissier• Patient Advocate - Maarten van der Weijden - @mvdweijden

Social Media Panel

#EBMT16

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@BldCancerDoc at #ASH14

Navneet Majhail, MD  Director, Blood & Marrow Transplant Program, @ClevelandClinic |

Tweets: blood cancers, blood/marrow transplant, health policy, musings as

doc | Opinions my own  

I am among the converted

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All You need to Know!

@BldCancerDoc: “Or How I Learned to Stop Worrying and Love Twitter" - @ASH_hematology http://ow.ly/Kj7CJ #ASH14 #bmtsm

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ResourcesASCO15 Education Book. Table 1 - http://ow.ly/NwAZ5

• Using Social Media to Learn & Communicate: It Is Not About the Tweet - #ASCO15 Ed Book http://ow.ly/NwAZ5• ASCO Social Media: http://www.asco.org/about-asco/social-media• How Can Social Media Improve Oncology Care? – Thompson. Comm Oncol 2013 http://ow.ly/C4kxZ  • Social Media & the Practicing Hematologist: Twitter 101 for the Busy Healthcare Provider – Thompson et al. 2015. Curr

Hematol Malignancy Reports• Social Media Myeloproliferative Neoplasms (MPN)-Focus on Twitter and the Development of a Disease-specific

Community: #MPNSM - Pemmaraju et al. 2015. Cur Hematol Malignancy Reports • Disease-specific Hashtags For Online Communication Disease-Specific Hashtags For Online Communication About

Cancer Care – Katz et al. 2015 JAMA Oncol. Nov 5, 2015 http://ow.ly/UiZ81 • & [Poster] #ASCO15 http://bit.ly/1cxy9Bp• Social media in cancer care: highlights, challenges & opportunities [3/30/16] - @DrAttai et al. "COSMO" @fsgfon

http://ow.ly/105vXi  

Title Author(s) (Date) LinkMedicine and Social Media: Why Do I Tweet? Younes A (June 15, 2009) http://ow.ly/sUlLOThe Evolving Role of Healthcare Professionals Katz M (October 20, 2011) http://ow.ly/xcaKkGetting Started in Social Media – What to Do Before You Join Katz M (April 28, 2014) http://ow.ly/IHi6qTwitter 101: Signing Up – A Tutorial for Oncologists Katz M (May 4, 2014) http://ow.ly/xc8WqTwitter 102: Account Settings – A Tutorial for Oncologists Katz M (May 5, 2014) http://ow.ly/xc8MOTwitter 103: Trolls, Malware & Spam – A Tutorial for Oncologists

Katz M (May 5, 2014) http://ow.ly/xc7OA

Internet, Social Media, Privacy Regulations, and Clinical Trials Bogler O, Thompson MA, Miller RS (June 2, 2014)

http://ow.ly/xEy8f

Social Media & Academic Oncology – Challenges and Opportunities

Katz M (December 19, 2014) http://slidesha.re/1Jqa6B0

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• What is social media?• Why social media?• Use Cases – Networks & Impact• Meetings & Networks• Action Plan

Outline

#EBMT16

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• What is social media?• Why social media?• Use Cases – Networks & Impact• Meetings & Networks• Action Plan

Outline

#EBMT16

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What is Social Media?• Social media is a form of media • Media is used to communicate• Communication:

at the core of what we do – with:– Patients– Colleagues– Public

Thompson MA, Majhail NS, Wood WA, Perales M-A, Chaboissier M. Social Media and the Practicing Hematologist: Twitter 101 for the Busy Healthcare Provider. Current Hematologic Malignancy Reports. 2015.

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While social media is media,there are differences between social and traditional media…

• Faster• Permanent (archived)• Interactive• Searchable• Impact often amplifies beyond the initial

“broadcast” audience

Thompson MA, Majhail NS, Wood WA, Perales M-A, Chaboissier M. Social Media and the Practicing Hematologist: Twitter 101 for the Busy Healthcare Provider. Current Hematologic Malignancy Reports. 2015.

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It’s not about the “Tweet” or the Platform…

• Platforms: – Facebook– Blogs (e.g., ASCO Connection, KevinMD)– Forums (e.g., Doximity, Sermo, HealthTap)– LinkedIn– Image/video (eg, YouTube, Vine, Instagram, SnapChat,

Periscope, Pinterest)– Twitter (& now w/ media integration)

Thompson MA. Using Social Media to Learn and Communicate: It’s Not About the Tweet. In ASCO 2015 Annual Meeting Educational Book.

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It’s not about the “Tweet” or the Platform…

• There is increasing blurring between these various tools, and the social media platforms have evolved and will continue to evolve.

• They will not be the same years from now.• The content, curation, and connectivity are what

matter

Thompson MA. Using Social Media to Learn and Communicate: It’s Not About the Tweet. In ASCO 2015 Annual Meeting Educational Book.

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• What is social media?• Why social media?• Use Cases – Networks & Impact• Meetings & Networks• Action Plan

Outline

#EBMT16

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Why?• SM offers rapid incoming and outgoing forms of

communications• Use cases:

– Increase signal-to-noise ratio– Education networks– Crowdsourcing / crowdfunding– Collaboration– Promotion

Thompson MA. Using Social Media to Learn and Communicate: It’s Not About the Tweet. In ASCO 2015 Annual Meeting Educational Book.

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Professional Workflow

"We’ve reached a point where social media is now part of the professional workflow.“

via @Doctor_V @33Charts - http://ow.ly/HXX06

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Why scholars use social media (Twitter)

Online Collaboration: Scientists & the Social Network - @Richvn @AcademicsSay - http://ow.ly/UQktv @nature - http://ow.ly/UQluG

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• What is social media?• Why social media?• Use Cases – Networks & Impact• Meetings & Networks• Action Plan

Outline

#EBMT16

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Cancer Tag Ontology (CTO)Disease-Specific Hashtags for Online Communication About Cancer Care E-pub 11/5/15 ; Print March 2016@JAMAOnc http://ow.ly/UiZ81 Matthew S. Katz, MD - @subatomicdoc Audun Utengen, MBA - @audvinPatricia F. Anderson, MILS - @pfandersonMichael A. Thompson, MD, PhD - @mtmdphdDeanna J. Attai, MD - @DrAttaiClaire Johnston, BA - @ClaireHJayDon S. Dizon, MD - @drdonsdizon

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CTO, OTO, PTO…via @symplur – can add hashtags

• Cancer Tag Ontology (CTO) - http://ow.ly/LSlFx eg -  #bmtsm #leusm #lymsm #mpnsm #mmsm

• Oncology Tag Ontology (OTO) http://ow.ly/LSjvg - Clinical Tags – eg

– #ImmunoOnc, #CardioOnc, #gerionc– #castemc = cancer stem cells– #hpeonc = Health Policy & Economics in Oncology

• Introducing the Pathology Hashtag Ontology [3/11/16] - @JMGardnerMD @Symplur http://ow.ly/ZqFki

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Multiple Myeloma Social Media #mmsm

• Online Patient Communities for the E-Patient: “Betwixt and Between” a New Patient & an Expert

ASCO Connection - 8/29/13• Embraced by MM thought leaders to educate• Quadrupled MD conversations about multiple

myeloma from 2012-2013 – Reid et al. ASCO14 e17644

http://connection.asco.org/Commentary/Article/ID/3645/Online-Patient-Communities-for-the-E-Patient-Betwixt-and-Between-a-New-Patient-and-an-Expert.aspx

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#mmsm Myeloma Twitter Discussion Group

• Developed #mmsm (multiple myeloma social media) Twitter discussion group with patient Cynthia Chmielewski (@myelomateacher).

• Moderate & facilitate provider, patient, advocate discussions.

• 10/15/15 - Dana Holmes (@DanaHolmes911) started a Facebook page to cover the #mmsm Twitter activity

• https://www.facebook.com/MultipleMyelomaMMSMTweetChat

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#mmsm Topics (1)Date Topic People09/15/13 Online Info, SMM Rajkumar, Orlowski10/20/13 Induction; VRd vs CfRd Kumar11/16/13 ECOG-ACRIN Mtg Thompson01/26/14 Allo SCT in MM Hari02/23/14 Racial Disparities in MM Rajkumar03/16/14 Clinical Trials in MM Chmielewski05/18/14 Can we cure MM? Fonseca06/29/14 Amyloidosis Weiss07/27/14 MRD Landgren08/24/14 MM Risk Assessment Usmani09/07/14 Crowdfunding for MM Research Ahlstrom

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#mmsm Topics (2)Date Topic People11/23/14 Advocating for yourself and others Chmielewski (@MyelomaTeacher)02/25/15 Panobinostat in multiple myeloma Rajkumar (@VincentRK) 03/12/15 #DFCIchat on multiple myeloma Ghobrial (@IreneGhobrial) 05/27/15 MGUS Screening and follow up Kristinsson (@sykristinsson)

& Landgren (@DrOlaLandgren) 07/01/15 Role of imaging… Gertz (@MorieGertz) 07/22/15 Immuno-Oncology in Multiple Myeloma Cohen (@CohenAd_MMdoc)

& Garfall (@AlGarfall) 09/09/15 Amyloidosis  Weiss (@brendanweiss) 10/14/15 Allogeneic SCT Hari (@phari)11/18/15 Social media in multiple myeloma @MyelomaTeacher & @northtxmsg12/09/15 FDA Approval of Daratumumab Usmani (@szusmani)12/16/15 FDA Approval of Elotuzumab Fonseca (@Rfonsi1)01/20/16 FDA Approval of Ixazomib Kumar (@myelomaMD)02/17/16 Agent Orange & M. Gammopathy Landgren (@DrOlaLandgren)04/27/16 NEOD001 in Amyloidosis Gertz (@MorieGertz)

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Facebook MM Groupshttp://www.myelomacrowd.org/myeloma-crowd-radio/

• Multiple Myeloma Family & Caregiver Group• General Multiple Myeloma Information

Group• MGUS Group• Smoldering Myeloma Group • Cyclin D(12;14) Group• MAF (14;16) Group• MAFB (14;20) Group• MMSET and FGFR3 (4;14) Group• CCND3 (6;14) Group• CCND1 (11;14) Group• Myeloma Patients with Kidney Issues Group

• Myeloma Patients with Chromosome 1 Addition Group

• Myeloma Patients with Chromosome 13 Deletion Group

• Myeloma Patients with Chromosome 17 Deletion Group

• Waldenstrom's Macroglobulinemia Patients• Plasma Cell Leukemia• General Multiple Myeloma Support Group• Myeloma UK Support Group• MM Allogeneic Transplant Group• Myeloma Australia Support Group• Multiple Myeloma Heavenly Heros

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#MCRIMyeloma Crowd Research Initiative

• Patient-Driven, High-Risk Focused Search for a Cure• Filling Funding Gaps• Crowdsourced ideas - Finding the “Best” Available Research• 36 ideas vetted by Scientific Advisory Board• Top 10 socialized on Myeloma Crowd Radio to patient

community• Votes by Patient Advisory Board & Scientific Advisory Board

- 2 projects selected• Selection based on:

– curative potential– time to clinic– applicability for high risk patients

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MCRI Crowdfunding• Peer-to-Peer campaign - patients and family members• 12-Day Challenge Social Media Campaign

- promote awareness and involvement– Pharma corporate sponsors– Corporate sponsors provide prizes– Patients, family, large circle of friends– Celebrity spokespeople

• Traditional fundraising tools/events• Goal: Involve patient community in taking action to advance their own cure

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Social Media and MPNs:#MPNSM

Pemmaraju N, Gupta V, Mesa R, Thompson MA Curr Hematol Malig Rep. 2015 Dec;10(4)413-20.

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Selection of Physician-Investigators Mentioned on #MPNSM

Pemmaraju N, Gupta V, Mesa R, Thompson MA Curr Hematol Malig Rep. 2015 Dec;10(4)413-20.

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#MPNSM: An ongoing Twitter conversation about MPNs

• Inspired by: CTO (based on #hcsm & #btsm) (Katz et al Disease-Specific hashtags for online communication about cancer care - JCO. 2015;33 suppl abstr 6520); and for hematology specific influence, #mmsm

• Founder of #MPNSM Twitter community : Naveen Pemmaraju, MD @doctorpemm – With key co-founders: @mtmdphd, @Vikas_Gupta_1, @mpdrc

• First tweet: @doctorpemm [Aug 2014]but #mpnsm did not really take off as a regular hashtag until Dec’14-Jan’15: during/after #ASH15 meeting

• As of Sept,13,2015: For #MPNSM, According to @symplur @healthcarehashtags project: Jan’15-Sept’15

– 2013 tweets from 285 participants– Resulting in: 4,049,415 impressions

• Brings together, in real-time: investigators/researchers, MPN healthcare providers, patients, advocates, organizations for discussion of basic science, translational, and clinical topics in MPNs

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Cross Soc Med Platform use for BMT

• @ASBMT Online Journal Club (@bmtojc, bmtojc.net) was launched in 2014 by Drs. @AndreasKleinMD, Perales, & Wood

• Journal club is held quarterly for fellows on a Google hangout with live-streaming & archiving on YouTube & simultaneous discussion on Twitter

• The article is presented by a fellow & a faculty discussant (often one of the lead authors of the article being discussed)

• This is another example of social media being used for medical education (#MedEd)

Thompson MA, Majhail NS, Wood WA, Perales M-A, Chaboissier M. Social Media and the Practicing Hematologist: Twitter 101 for the Busy Healthcare Provider. Section: Social Media Impact of Hematologic Malignancies. Current Hematologic Malignancy Reports. 10(4), 405-412. 10/09/15 online

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ASBMT Clinical Case ForumWeb-Based Case Discussions In partnership with Best Doctors

Secure Login for Members and Invitees

ASBMT CCF – Cases

Figure 1. Cumulative number of cases posted on the ASBMT CCF.

Pere Barba, Linda J. Burns, Mark R. Litzow, Mark B. Juckett, Krishna V. Komanduri, Stephanie J. Lee, Sean M. Devlin, Luciano J. Costa, Shakila Khan, Andrea King, Andreas Klein, Amrita Krishnan, Adriana Malone, Muhammad Mir, Carina Moravec, George Selby, Vivek Roy, Melissa Cochran, Melisa K. Stricherz, Michael D. Westmoreland, Miguel-Angel Perales, William A. Wood

Success of an International Learning Health Care System in Hematopoietic Cell Transplantation: The American Society of Blood and Marrow Transplantation Clinical Case Forumnull, 2015, Available online 21 December 2015http://dx.doi.org/10.1016/j.bbmt.2015.12.008

Figure 2. Distribution of diseases in patients undergoing HCT reported in the CCF and in the United States (2013).

Pere Barba, Linda J. Burns, Mark R. Litzow, Mark B. Juckett, Krishna V. Komanduri, Stephanie J. Lee, Sean M. Devlin, Luciano J. Costa, Shakila Khan, Andrea King, Andreas Klein, Amrita Krishnan, Adriana Malone, Muhammad Mir, Carina Moravec, George Selby, Vivek Roy, Melissa Cochran, Melisa K. Stricherz, Michael D. Westmoreland, Miguel-Angel Perales, William A. Wood Success of an International Learning Health Care System in Hematopoietic Cell Transplantation: The American Society of Blood and Marrow Transplantation Clinical Case Forum

null, 2015, Available online 21 December 2015

http://dx.doi.org/10.1016/j.bbmt.2015.12.008

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• What is social media?• Why social media?• Use Cases – Networks & Impact• Meetings & Networks• Action Plan

Outline

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#ASH13

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#ASH14

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#ASH13 -> #ASH14

• @chimoose (Greg Matthews) of @W2OGroup

• MD conversations increased 44% • # of MDs tweeting increased 83% • Metrics for network quality

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ASH12 -> ASH14 Stakeholder Networks

http://mdigitallife.com/the-evolution-of-ash-measuring-the-strength-of-online-networks/

ASH12 ASH14

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The Evolution of ASH – Measuring the Strength of Online Networks [12/1/15] - @KaylaRodrigue11 @MDigitalLife http://ow.ly/Vl1ph #ASH15 

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#ASH14 #ASH15

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#ASH14 #ASH15

• @chimoose (Greg Matthews) of @W2OGroup

• MD conversation increased by 175%• # of MDs tweeting increased by 85%• Metrics for network quality

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#EBMT2014 Physician Mention Map

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#EBMT15 Physician Mention Map

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#EBMT2014 vs. #EBMT15

Total physician authors increased from 14 in 2014 to 50 in 2015, but physician’s decreased as a portion of overall #EBMT15 health ecosystem conversation (Pt conversation incr 10%)

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#EBMT2014 #EBMT15• @chimoose (Greg Matthews)

of @W2OGroup• MD conversation increased by 453%• # of MDs tweeting increased by 257%• Metrics for network quality

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#ASH15 and #EBMT15 Comparison

combination of number of posts and number of health ecosystem participants

amount of participation from different health ecosystem stakeholder groups, e.g., doctors, patients, healthcare company execs, caregivers, etc

the breadth of the topics discussed

the level of connection & conversation engaged in by participants

The presence of industry “heavy hitters” in the conversation

*** Quality is higher for EBMT15 due to the smaller set of authors, resulting in a more connected conversation among all authors

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Network Scoring in 2016 Health Care Conf#ASCO15 = 100%. Can compare #EBMTxx vs. #ASHxx

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• What is social media?• Why social media?• Use Cases – Networks & Impact• Meetings & Networks• Action Plan

Outline

#EBMT16

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Action Plan• Create account

– If tentative can “protect” and just watch• Follow high value tweeps • Follow hashtags and learn the culture• Engage at your own pace• Learn more (eg Mayo/Ragan, HootSuite, etc)• Mentor others

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Thank Yous

Social media is a team learning and sharing experience…

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Thank YouMentors

• Mike Fisch, MD, MPH - @fischMD• Bob Miller, MD - @rsm2800• Vincent Rajkumar, MD - @VincentRK• Anas Younes, MD - @DrAnasYounes• Bryan Vartabedian, MD - @Doctor_V• Et alia

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Thank You #mmsm #MCRI

#mmsm• @myelomacinderell• @MyelomaTeacher• @VincentRK• @Myeloma_Doc• @MyelomaMD• @DanaHolmes911• And many others

#MCRI• @AhlstromJenny• @paulahlstrom• @myelomacrowd• & all of the volunteers…

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Thank You CTO & W2O

CTO • Matthew S. Katz, MD - @subatomicdoc

• Audun Utengen, MBA - @audvin• Patricia F. Anderson, MILS -

@pfanderson• Michael J. Fisch, MD - @fischMD• Deanna J. Attai, MD - @DrAttai• Lee Aase - @LeeAase• Bob Miller, MD - @rsm2800• Claire Johnston, BA - @ClaireHJay• Thomas Lee - @tmlfox• Don S. Dizon, MD - @drdonsdizon

W2O• Brian Reid - @brianreid• Greg Matthews - @chimoose• @KaylaRodrigue11 • @W2OGroup • @MDigitalLife • The Social Oncology Project

• 2013: http://ow.ly/VjJKr • 2014: http://ow.ly/R0oNs • 2015: http://ow.ly/NHNGb

• The Evolution of ASH – Measuring the Strength of Online Networks [12/1/15] http://ow.ly/Vl1ph

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#EBMT15 Physician Mention Map

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.@TheEBMT will continue to popularize Twitter, especially at #EBMT16 as a means to amplify the scientific impact. http://ow.ly/ThcxT

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Addendum

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9 next generation metrics to measure the effectiveness of an online network

• Rather than just looking at the number of posts (size) or the theoretical “reach” of the authors of those posts (an aggregation of the number of followers each poster has – a misleading measurement), we’re measuring online conversations with 9 different metrics:

• Size Index: Our index incorporates the number of posts & the number of unique health ecosystem authors (validated & indexed stakeholders in the health ecosystem like doctors, patients, hospitals, reporters, healthcare companies, caregivers, etc.)

• Author Diversity: How many different stakeholder groups are represented in the conversation? Is it just doctors? Or just healthcare company executives?

• Content Diversity: How broad are the topics that are discussed at the conference?• Connectivity: How well-connected are the participants in the conversation to each other?• Equitability: Are there one or two people who dominate the conversation, or is there a

more equal share among participants?• Originality: How many posts are original vs shared (or retweeted) posts?• Temporality: How long is the nose (pre-conference) and tail (post conference) relative to

the conversation occurring in real time during the conference?• Impact: How many of the participants have real influence in the online health ecosystem?• Conversationality: How many posts represent actual conversations between participants

as opposed to simple posts?

The 9 next generation metrics to measure the effectiveness of an online network [1/11/16] @chimoose @MDigitalLife http://ow.ly/Xf1mY

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Education OutreachA few examples to RT

An educated & engaged (via social media & IRL) public necessary to sustain a national #clinicaltrials infrastructure - @mtmdphd

#ClinicalTrials Information for Patients and Caregivers - @theNCI @NIH http://ow.ly/YqDRV

Creating a "culture of research" in a community hospital: Strategies & tools from @theNCI NCCCP - Dimond et al. 2015 http://ow.ly/Jw6hM 

RT @rsm2800 “I think a big misconception about clinical trials is that they are the “last resort.” In many cases they may be best first option

"Without clinical trials, cancer treatment would always remain the same." via @TomBeer in @OncologyTimes ow.ly/fmaKk

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CTO - More detail in the poster…

1) Disease-specific hashtags for online communication about cancer care - @subatomicdoc et al. #ASCO15 Abstr 6520 http://ow.ly/MV516 2) Slideshare: http://www.slideshare.net/subatomicdoc/disease-specific-hashtags-for-communication-about-cancer-care-48866106

Contents are proprietary and confidential.

2009 2010 2011 2012 2013 20140

5000

10000

15000

20000

25000

30000

35000

Patient Mentions of Doctors Doctor Mentions of Patients

8,404% Growth

3,896% Growth

An increasingly connected community

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Following Meeting Tweets – and Analytics in Real Time…

                   Navneet Majhail, MD @BldCancerDoc  6h6 hours ago

12,000 tweets by 2300 tweeters in 1st two days of #ASH15 http://www.symplur.com/healthcare-hashtags/ASH15/analytics/?hashtag=ASH15&fdate=12%2F04%2F2015&shour=00&smin=00&tdate=12%2F06%2F2015&thour=00&tmin=00 …

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#ASH15 Analytics…in real time…

                   Tejas Desai, MD @nephondemandRealtime #ASH15 analytics: Tremendous activity from Day -1 to 0: 16,263 tweets from 2,521

authors.

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#ASH15

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Mathematicians mapped out every “Game of Thrones” relationship to find the main character

http://qz.com/650796/mathematicians-mapped-out-every-game-of-thrones-relationship-to-find-the-main-character/?utm_source=digg&utm_medium=twitter