This is a webinar for Prostate Cancer Canada (December 3, 2013 at 3pm). Examples are largely focused on people with cancer and their caregivers finding supportive community online and answering the questions: - Where can I find welcoming communities? - Are these communities safe? - How do you get started? Thanks to the social web, people from around the world come together to share information and support online. We build networks and join communities online when we need help or advice. Patients, caregivers, family, friends, and other supporters are increasingly taking part in online health communities to share information and find support.

1. Using Social Media Safely
Colleen Young, Manager of Social Innovation
ELLICSR at the Princess Margaret Cancer Centre
December 3, 2013
Proudly supported by a consortium of industry partners

2. Colleen Young (@colleen_young)
(hashtag: #hcsmca)

3. Poll

4. “If you keep
Googling, you’ll find that
just about everything on
the Internet ends with
porn or a brain tumour, or
both.”

6. Social web NOT social media

7. It’s

8. “...this forum [is] like a
big cozy blanket when I need
someone to lean on ...”
~Virtual Hospice community member

9. Let’s look at
• What is an online community?
• What type of community are you looking for?
• Where can you find them?
• How you can share online safely?
• How do you get started?

10. What is an online community?
A group of people who share a
strong common interest, form
relationships and interact online.

11. Types of communities for health
• Community of circumstance
• Exchange of information and support
• Share personal journey
• Community of action
• Health & well-being, behaviour change
• Advocate
• Fundraise
• Community of practice
• Collaborate and create
• Share – teach and learn

12. What to look for
• Who is the creator and/or funder?
• Who is moderating and how?
• What are your privacy options?
• How active is the community?
• Does the “personality” of the community suit
you?
• How would you rate the quality of
information?
• Is it relevant, credible, accessible and timely?

13. Communities of
Circumstance
(examples)

14. CancerConnection.ca

15. Closed vs. Open community

16. VirtualHospice.ca

17. CancerChatCanada.ca

18. Other social networks
…and many more

19. Communities of Action

20. Blogs
• Write about your journey
• Learn from others
• Build a community collective

21. Video
• Learn
• Share

22. Facebook
• Personal page & Friends
• Join Groups
• Like Pages

23. Twitter
• Who is on Twitter?
• Patients, caregivers, providers, patient advocacy groups,
researchers, fundraisers, hospitals & more…
• Who to follow?
• @ELLICSR, @ELLICSRkitchen, @ProstateCancerC,
@DrRKSingal, @JYLeeUroSMH, @subatomicdoc,
@SunnybrookHSC, @ThePMCF
• Hashtags of interest
• #pcsm
• #caregivers
• #hcsmca

24. #hashtag communities
@symplur www.symplur.com

25. Health Care Social Media Canada
 3+ years
 8,308 participants
 110,786 tweets
 150 chats
Wednesdays at 1 pm ET
Last Wednesday of the month at 9 pm ET
cyhealthcommunications.wordpress.com

26. ELLICSR online
ellicsrblog.theprincessmargaret.ca
facebook.com/ellicsr
ellicsrkitchen.ca
twitter.com/ellicsr
twitter.com/ellicsrkitchen
youtube.com/ellicsr
youtube.com/ellicsrkitche
n
n
pinterest.com/ellicsrkitche

27. Using social media safely
• Know the terms of use and privacy conditions.
• Keep your password(s) confidential.
• Be yourself, even when posting anonymously.
• What you post online stays online – forever.
• Log off when you leave your computer.
• Report misuse.

28. Thanks for listening...just
typing this out has
helped me feel better :)
This forum is a GREAT place to vent;
to just be myself. As a caregiver, I
didn't know I needed support... I
was so busy caring about my family,
I forgot about me.
I am reaching out looking for
others who perhaps are in
the same boat and want to
connect.
Its astonishing how
words from a computer
screen can make it
actually possible to go
through hell.

29. In between
doctors visits,
we have a lot
of life to live.
~ Kathy Kastner

30. Questions
www.theprincessmargaret.ca
ellicsrblog.theprincessmargaret.ca
cyhealthcommunications.wordpress.com
@colleen_young
@ELLICSR
@hcsmca
colleen.young@rmp.uhn.on.ca

31. Questions for you
• What is the single biggest barrier stopping
you from sharing about health online?
• What do you like the most about sharing
online?

32. Thank you for joining us!
Proudly supported by a consortium of industry partners
Visit prostatecancer.ca/ExpertAngle for more webinars
Proudly supported by a consortium of industry partners