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

Figures from Google analytics

8.5 million page views

850k unique users

16,848 topics

109,000 replies

27 online clinics

100 groups

Figures from Google analytics

Groups

New to the site group

What they do:• welcoming• responding• signposting• linking• reporting

How we support them:• training• resources• private group• meet-ups• recognition

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

How do nurses and other professionals help us keep

the site safe and supported?

Support Line phone number

Nurses

Benefits advisers

Financial information

Booklets

Drop-in Centres

– Safeguarding

– Expert webchats

– Blogging

– Moderation (alternative therapies)

• 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

What does success look like on a peer support community, and

how can we measure it?

Full screen image slideSecond line if required

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%

Grannylara – Online Community member

Qualitative feedback

• Users as stakeholders

• Iterative approach

• Regular, small releases

• Testing and feedback

• Test areas that users can opt in to

https://www.youtube.com/watch?v=OqtL7UMn7bM