Wednesday, May 11, 2016

May 11, 2016 Getting Social with your Health #gyncsm Chat

We were delighted to welcome John Novack (@teaminspire) from Inspire ( to this month's Getting Social with your Health chat. John is a former longtime healthcare reporter/editor and served as a board member and officer of the Association of Health Care Journalists. Inspire serves as an online patient support community for over 100 patient advocacy organizations and their members, including the Ovarian Cancer National Alliance and the National Cervical Cancer Coalition. Inspire creates and manages health condition specific support groups for over 750,000 patients and caregivers.

We had 37 participants during the night's chat and over 2.9 million impressions.  You may find analytics here.

You can get a taste of our discussion below. For all responses, please read the full transcript here.

T1: What social media (SM) outlets do you turn to for info about GYN cancers / your health? What's been helpful?

  • I like Twitter and LinkedIn for sharing on info on GYN cancers and survivorship in general.
  • IMO Twitter is the best SM outlet for info. Advocates, medical profs use Twitter more, great way to connect to experts.     
  • Our sense is that people find multiple resources news or community, & hone in eventually on what works for their needs.
  • only shortcoming with #some is there is bad info mixed with good and pts often don't know how to tell the difference                         

T2: Do you share your own health journey on social media (SM)? Why or why not? If yes, how did you decide which outlets?

  • I often use our family's cancer journey or my learnings for patients journeys in published writings. too long for social media
  • Writing is my catharsis, & sharing stories helps others in similar situs know they're not alone.
  • Yes, on all SM platforms. Talk a lot about being a #Previvor#Lynchsyndrome #Oophorectomy, and #HereditaryCancer. Write a lot.
  • I share my journey on SM to advocate. I was more private when early stage due to career concerns.  
  • YES - Started w/ ACOR , then on my blog , Twitter, Facebook groups, @inspire, @smart_patients

T3a: Why do you join online patient groups? Join multiple? What info were you 1st seeking? (treatment, trials, side-effects, etc)

  • I join online patient groups (like #gyncsm) to support the spread of solid healthcare information and to keep current on patient needs.
  • I started with cancer chat on AOL to help my husband, then got into the deep stuff with ACOR and continued it on Smart Patients.
  • many seek to know aren't alone, hear from long-term survivors, find hope - also the practical, day-to-day tips
  • Initially for support, got frustrated -- don't find them helpful or supportive
  • One thing it's good for is debunking the miracle cures because people have developed trust in their groupmates

T3b: What topics do you value most? (mental health, sexuality, support, etc.) Why are people taking these online vs. other options?​

  • In our @OCNA group, top topics treatment, recurrence, and side effects.
  • In our @StopHPVCancer group, the top topics are cervical precancer, treatment, & early detection.
  • Emotional support component is key. When #OvarianCancer group refers to "teal sisters," the deep connections are clear.
  • there is only so much that can be covered in the oncologist/doctors office. so much to learn beyond and ppl help you process 
  • Terms & acronyms of particular cancers intimidate many newly diagnosed. Good online groups allow for “dumb questions.”
  • Online support communities: Cuz between doc appointments, we have a lot of living to do

T4: What advice would you share about seeking health info and support on social media/patient communities? What are some cautions?

  • There are so many great resources online. But you need to be a critical consumer. Check for moderation, sales agenda, etc.
  • My advice:Listen, but don't make behavioral changes based on Internet advice. Check with Doctor first.
  • be wary of "miracle" cures & treatments. Even well-meaning folks can promulgate dicey stuff in the name of giving hope
  • Same evaluation required as for any website: trustworthy source/sponsor, credible, timely, relevant.
  • For us, strong online communities have self-regulation, but with an openness in tone and in content. Can be tough balance. 
  •  read the “about” page and if there isn’t an “about” page, or easy way to make contact, could be a problem.
  • I seem to hear the most issues w/ facebook groups. A platform that meets ppl where they are but not always strong moderation 

T5a: How have you benefited from getting social w/ your health - publicly and/or in patient groups? Does it impact your decisions?
  • I'm on a journey to becoming a more engaged, empowered patient and getting social w/ my health has helped me and inspired me.
  • Finding a group of folks who understand at a personal level how to navigate the cancer journey. The actual day to day stuff 
  • My decision to get social has made me a better clinician. I can really hear what people need and adjust my care.
  •  Advocacy via SM gives me a sense of purpose. 
  • Meeting other amazing advocates, learning about treatments etc from “twiends” who are gyn oncs and researchers
  • Yes, practical concerns like how to deal with side effects - patients and caregivers share good tips.

T5b: How have you benefited by participation in the #gyncsm community? How can we increase participation by those diagnosed w/ gyn cancers? 

  • The biggest benefits are in the community itself. Learning from each other.
  • make sure patients know "what's in it for them" when using your services. You have good stuff! #Flaunt it :)
  • I learn about great advocacy tools and current research--such a gift.
  • Twitter communities like #gyncsm bring together so many varied perspectives into one conversation. Invaluable to me.
  • Providing an atmosphere where our new gyn cancer members feel heard--not judged--is crucial.

Please see our resource section below for articles on the use of social media by patients and physicians.

Do you want to join in the conversation or continue to discuss this topic? Join us on Smart Patients at

Thank you, John Novack, for joining us and sharing your insights on social media and your online support communities.

We hope you all will join us on Wednesday June 8, 2016 at 9pm ET as we chat about What's New in GYN Cancer Research. 

Co-moderator #gyncsm chat


Social Media in Oncology: Does It Help Patients?

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey

Disease Specific Hashtags for Communication about Healthcare

Twitter Responds: Reactions to Patients Tweeting about Their Cancer -

Virtual Patient Communities Engendering A New Social Health Era

How do we know that social media is important to health care? 

e-Patients in Twitter Hashtag Communities 

Practical Guidance: The Use of Social Media In Oncology Practice

Understanding Users Motivation to Share Health Information on Facebook -Thesis

A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication 

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