Patients Pushing the Boundaries of Privacy - Good for Them. Good fo You
A presentation for oncology nurses demonstrating how online patient and caregiver communities can support them in their practice and the families they care for. Thanks to the social Web, people facing a new diagnosis, undergoing treatment, or living with chronic illness can tap into larger networks online. Patients and caregivers know things – about themselves, about each other, about treatments – and they want to share what they know to help other people and ask questions. Increasingly patients and families participate in online communities to connect with peers and health care providers. In this presentation, Heather Sinardo and Colleen Young discuss the evolving digital landscape of connection and isolation, and the pros and cons of disclosing of illness and cancer in the digital age. We examine online patient communities, what makes them work and why. Learn how to evaluate the quality of an online community where self-disclosure discussions deepen the sense of community, and how these stronger ties enhance the health and well-being of the online community members and their community.
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Patients Pushing the Boundaries of Privacy - Good for Them. Good fo You
- 1. Patients Pushing the Boundaries of Privacy - Good for Them; Good for You Heather Sinardo, Canadian Cancer Society Colleen Young, Canadian Virtual Hospice
- 3. “A group of people who share a strong common interest, form relationships and interact online.” ~Richard Millington What is an online community? https://flic.kr/p/rSCbtk
- 4. Ingredients of successful communities https://flic.kr/p/c8Qiq5
- 5. Self-disclosure • Creates connections • Builds circles of trust • Deepens sense of community • Maintains respect
- 7. https://flic.kr/p/8tReD5 Dive right in or not
- 8. Role of the Community Manager https://flic.kr/p/rxBncX
- 10. If I were an oncology nurse… how would I know if I should recommend an online community?
- 11. “...this forum [is] like a big cozy blanket when I need someone to lean on ...” ~Virtual Hospice community member
- 12. “Between medical appointments, we have a lot of living to do.” ~Kathy Kastner
- 13. Thank you CancerConnection.ca | Parlonscancer.ca VirtualHospice.ca | Portailpalliatif.ca @cancersociety @virtualhospice @colleen_young hsinardo@ontario.cancer.ca colleen@virtualhospice.ca
Editor's Notes
- Colleen Opening story – (I may change the story and pic) Suzanne bridging communities CancerConnection and Virtual Hospice
- What is an online community Community of circumstance
- Ingredients of successful communities Activity Connectivity Growth and renewal Safe and welcoming What’s your preference i.e., open vs. closed Who’s sponsoring it Moderation
- Disclosure – notes from https://cyhealthcommunications.wordpress.com/2014/07/30/i-want-my-sex-life-back-tmi-or-gold-for-online-communities-and-their-managers/
- Level of investment - HS webcast blogs let's discuss discussion threads Dipping your toe – cannon ball
- Role of community manager - CY
- HS - stats from cc.ca testimonial about my nurse recommended online community how community prepares people for appointments Word clouds from CVH and CC.ca
- Benefits for nurses – HS Ask them what they would like to see in an online community Be able to evaluate a community find the good ones; good to know you can send them to safe place moderate tone purpose anonymous credibility of host org level of activity read and learn – HS words that helped you, what did people say you to
- Hope. When I read the many interactions on this website I feel the strength of this community. It reaches out and wraps itself around me still. The first time I posted it reached back to me. Every time I visit I am wrapped again in the love and support of this place. Thank you to everyone who shares their hopes, their fears, their tears and their laughter, here, in this place. You fill me with strength. You give me the courage to hope. Posted: Wednesday, November 14, 2012 11:10:11 PM