Social media and cancer communities

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In this talk I gave at the American Society of Clinical Oncology's annual meeting, I discuss the nature of online cancer communities. I focus on Twitter and the use of hashtags in particular. I also discuss the value of RSS, LinkedIn and how to go about choosing where oncology professionals may want to devote their energies.

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  • Change.org petition asking CMS to cover LDCT screening
    - acquired ~8300 signatures in 3 weeks with no robots
  • Hashtags let you “narrowcast” and create communities based upon interest
    - Why shouldn’t every disease have ability to create community?
  • Social media and cancer communities

    1. 1. SOCIAL MEDIA AND CANCER COMMUNITIES Matthew Katz, MD Considerations in Clinical PracticeJune 2, 2014
    2. 2. Conflict of Interest  External advisor, Mayo Clinic Center for Social Media  Communications Committee, Massachusetts Medical Society  No financial links, leadership position with any healthcare or social media company
    3. 3. Overview  Social Media  Definition  Risks and Benefits in Medicine  Cancer Communities  Definition and Types  Focus on Twitter, LinkedIn  How it enhances your practice  Communication  Collaboration  Summary
    4. 4. Definition of Social Media “Social media are web-based tools for interaction that, in addition to conversation, allow users to share content such as photos, videos, and links to resources” -- Meredith Gould, The Social Media Gospel
    5. 5. Risks of Social Media  Patient  Loss of boundaries  Misinterpreted/bad communication  Professional  Reputation  Malpractice  Personal  Split personality (personal/professional)  Burnout
    6. 6. Benefits of Social Media  Patients  Coordinate Care  Improved communication  Career  Networking  Education  Career Opportunity  Reputation Management  Research  Collaboration  Funding
    7. 7. Definition of Community  A feeling of fellowship with others, as a result of sharing common attitudes, interests and goals. Source: Oxforddictionaries.com http://bit.ly/1ew9g9F
    8. 8. Brave New World  Geography doesn’t matter as much as internet access  Communities are defined by interest, not location  New dynamics for previously isolated people
    9. 9. POST Methodology People: Know your audience. Objectives: Define goals/endpoints. Strategy: Plan how you want to interact with others online. Technologies: Pick a platform that works for your strategy. Source: Forrester Research http://bit.ly/1nm0KtN
    10. 10. Most Efficient = RSS
    11. 11. Online Community Life Cycle Young C, JMIR 2013 http://1.usa.gov/1lYG9yb
    12. 12. Patient-oriented  Nonprofit  American Cancer Society http://bit.ly/1thFA4e  ASCO http://cancer.net  Macmillan Cancer http://bit.ly/1eHefEe  LIVESTRONG http://bit.ly/RuBGqx  NCI’s LiveHelp http://1.usa.gov/1f1SfPx  For profit  smartpatients.com  talkabouthealth.com  healthtap.com  Live chats  Twitter.com
    13. 13. Social Networks for Professionals
    14. 14. Twitter  Microblogging platform  140 character limit  Founded 2006  2007: 4000 tweets daily  2014  255 M active users, 1 billion registered  11% of Americans tweet at least once a month  80% of world leaders have an account Source: Expanded Ramblings, http://bit.ly/1wTe2E4
    15. 15. Rapid growth of professionals on Twitter • Now ~75,000 healthcare professionals online • 152,000 tweets/day Creation Pinpoint, http://bit.ly/1hU6Kqd http://bit.ly/QOJqCy
    16. 16. Source: Creation Pinpoint, http://bit.ly/QOJqCy Where are they?
    17. 17. Cancer on Twitter Organization Twitter Handle Followers World Health Organization @WHO 1.2 M Mayo Clinic @MayoClinic 754 K American Cancer Society @AmericanCancer 457 K Health Human Services @HHSGov 369 K Science Magazine @ScienceMagazine 249 K NEJM @NEJM 177 K Lancet @TheLancet 111 K National Cancer Institute @theNCI 51 K Institute of Medicine @theIOM 31 K MD Anderson @MDAndersonNews 26 K ASCO @ASCO 24 K AACR @AACR 18 K RSNA @RSNA 14 K American College of Surgeons @AmCollSurgeons 14 K Twitter data, March 29, 2014
    18. 18. How to start on Twitter* * Applies to most platforms
    19. 19. Hashtags on Twitter  Used to identify specific data  Twitter started using for trending topics in 2010  “Narrowcasting” on a channel – but interactive  Can coordinate live chats on a specific topic Source: weknowmemes.com http://bit.ly/1lwUQ7S
    20. 20. #bcsm – Breast Cancer & Social Media  Started July 4, 2011  Organized by two breast cancer advocates and joined by breast surgeon to moderate weekly chats  Focus on advocacy, survivorship, support, metastatic breast cancer, new research
    21. 21. #BCSM Activity, March 2014 Source: Symplur.com
    22. 22. Current cancer chats Tweet chat When Tweets in 2013 #bcsm Monday, 8 PM CST 84391 #btsm 1st Sunday, 9 PM CST 49077 #gyncsm 2nd Wednesday, 8 PM CST 4374 #lcsm Every other Thursday, 7 PM CST 32339 Source: Symplur.com Tweet disclaimer used on #gyncsm http://gyncsm.blogspot.com/p/tweet-disclaimer.html
    23. 23. #LCSM Growth Source: Symplur.com
    24. 24. Source: Symplur.com, http://bit.ly/1cAmuR7
    25. 25. Source: International Urology Journal Club, http://bit.ly/1io3Fx9
    26. 26.  Mainstream  Professional  Default = positive spin  Lots of industry exposure  Helpful for  Showing expertise  Networking and job search  Not as focused as doctor-oriented social networks
    27. 27. Share Your Expertise http://slidesha.re/1hTBgk7
    28. 28. How It May Enhance Practice  Better understanding of our patients  Concerns  Hot topics that come up in clinic  May enhance communications skills  Collaboration  EMR or 3rd party HITECH/HIPAA compliant communications tools  May help with clinical and basic science research  Reputation/Brand Management
    29. 29. One of many options
    30. 30. Where to start  RSS feed  Find a way to bring interesting content to you  Sign up for DISQUS commenting system  LinkedIn.com  Twitter.com  Learn the ropes and listen first  Content curation, creation can follow later
    31. 31. Summary  Social media are pervasive, powerful communications tools  Social media fluency is a skill or tool in medicine  Require some time to learn, but little technical skill needed  You can find communities online that enrich your life and your practice of medicine
    32. 32. Thank you  ASCO  Don Dizon et al.  All my teachers, online and in person

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