How to keep your community safe and
supported
• Michael Howard, Online Community Manager, and Priscilla
McClay, Senior Online Community Officer
• 25 February 2015
Macmillan's Online Community is one of the UK’s largest peer support communities. It empowers people affected by cancer to share experiences and support each other
Tips for keeping your community safe and supported...
• Welcome people and help them find their way around
• Make the most of your super-users
• Go beyond peer support
• Know what to do if someone is at risk
• Measure success
• Involve your users in updates
8.5 million page views
850k unique users
16,848 topics
109,000 replies
27 online clinics
100 groups
Figures from Google analytics
I believe that only people who have been through the treatment for this terrible disease
can truly understand how overwhelming it can be, especially in
the early stages, and if I can help someone
through that very scary phase, then I will.
MacmillanCommunityChampion
• Programme of live online Q&A sessions with experts
– Two or three times a month
– Topics have included: cancer types, treatment types, carers, side effects, benefits and financial issues
– Experts have included nurses, benefits advisers, a dietician, a Boots Macmillan Beauty Adviser, a radiographer
– Statistics feed into services KPIs
What do we offer?
– Training
– Practice sessions
– Facilitating the chat
– Keeping track of questions
– Telephone support
– Encouragement and reassurance
‘The fastest hour of your life.’
‘Doing a webchat is like bungee jumping.’
- Macmillan Support Line nurses
What happens if a community member is suicidal or at risk of harm?
Post reported
Assess post
Remove post?
Communicate with member Contact police
‘The Mac Site was my lifeline after I overdosed and everyone was so supportive including the staff who rang me a few times.’
- Community member
Using a computer-based support system made patients significantly more competent at seeking information, more comfortable participating in care, and more confident speaking to doctors
Gustafson D et al (2001) Effect of computer support on younger women with breast cancer. Journal of general internal medicine. USA
Using the internet to exchange knowledge and experiences made patients feel empowered and can have potential for aiding rehabilitation.Hoybye M et al (2005) Online interaction. Effects of storytelling in an internet breast cancer support group. Psycho oncology.
Denmark
• Number of posts
• Number of discussion topics
• % Reply rate
• Number of replies
• Time to reply
• Number of users joining groups/posting
• Retention
Summer 2014
– There are people in the Community who care – 81%
– I’m likely to recommend the Community – 85%
– I was satisfied with my most recent interaction with the Community – 81%
• Users as stakeholders
• Iterative approach
• Regular, small releases
• Testing and feedback
• Test areas that users can opt in to