Christina and I are very social on social media. We have Twitter, Facebook and Instagram accounts. We participate in online patient support communities such as those found on Smart Patients, Inspire and Facebook. We also share our health stories. Recently a number of studies (Dr D Attai and Dr M Katz) on patient use of social media have been presented at conferences. Yet it happens to be a topic that we haven't discussed in our now two plus year old Twitter community. Why do patients look to social media communities for support and information? Do they remain anonymous or take part in active discussions? Are they finding reliable resources? Why do health care providers share information on social media? Of course we also want to discuss what benefits participants in the #gyncsm community get from our chats as well as which topic discussions they find most valuable.
On Wednesday, May 11th at 9pmET (8pmCT/6pmPT) we will be joined by John Novack, Communications Director at Inspire (@teaminspire) to discuss Getting Social with your Health. John is a former longtime healthcare reporter/editor and served as a board member and officer of the Association of Health Care Journalists.
Inspire (www.inspire.com) serves as an online patient support community for over 100 patient advocacy organizations and their members, including the American Lung Association, Ovarian Cancer National Alliance, American Sexual Health Association, and National Psoriasis Foundation. Inspire creates and manages health condition specific support groups for over 750,000 patients and caregivers. Inspire also helps the industry to connect with members for the purpose of clinical research, market research, and promotion.
We hope you join us for a discussion revolving around what you find helpful, or not so helpful, about sharing your health issues on social media.
T1: What social media (SM) outlets do you turn to for info about GYN cancers / your health? What's been helpful?
T2: Do you share your own health journey on social media (SM)? Why or why not? If yes, how did you decide which outlets?
T3a: Why do you join online patient groups? Join multiple? What info were you 1st seeking? (treatment, trials, side-effects, etc)
T3b: What topics do you value most? (mental health, sexuality, support, etc.) Why are people taking these online vs. other options?
T4: What advice would you share about seeking health info and support on social media/patient communities? What are some cautions?
T5a: How have you benefited from getting social w/ your health - publicly and/or in patient groups? Does it impact your decisions?
T5b: How have you benefited by participation in the #gyncsm community? How can we increase participation by those diagnosed w/ gyn cancers?
Here are some interesting articles you may read prior to our discussion.
Marie Ennis-O'Connor:
Virtual Patient Communities Engendering a New Social Health Era
https://www.powerfulpatients.org/2015/11/03/virtual-patient-communities/
Susannah Fox:
How Do We Know that Social Media is Important to Health Care? via @S4PM
http://e-patients.net/archives/2013/10/how-do-we-know-that-social-media-is-important-to-health-care.html
We hope you can join us on Wednesday May 11 at 9pm E and tell us why to "get social with your health".
Dee
Co-moderator #gyncsm chat
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