This is a guest blog by Michael Howard , Macmillan Cancer Support Online Community Manager.
A Cancer diagnosis and the subsequent treatment are life-changing events. Macmillan’s Online Community (community.macmillan.org.uk) is a place where people affected by cancer can communicate with others who are going through similar experiences. New research released by Macmillan Cancer Support today shows that 1 in 3 people affected by cancer recently felt lonely or isolated, but worryingly 88% said they wouldn’t want to make their feelings ‘someone else’s problem’. Whether you are a patient, carer or family member – there is a group on the community for you, a safe place where you can get or give support, exchange information, pick up tips and hints from others or just quietly read about others’ experience and know that you’re not alone.
Macmillan’s Online Community is one of the UK’s largest healthcare communities with 72,000 unique visitors per month. I am the Community Manager on the site and I work with Community Officers to make sure that the community runs smoothly and that people are kept safe and get the support that they need. Here are my tips to run and grow a healthy and supported Online Community.
When dealing with sensitive content and vulnerable people, it’s especially important to keep them safe and supported. So tip number 1 is to have a good set of guidelines – everyone who joins the forums accepts the rules of the site and these set the whole tone for the community – it’s so useful to be able to refer to a guideline when you need to moderate a person or behaviour on the community.
- The importance of a good team. We currently have a group of 20 online volunteers, the Community Champions who are selected from our most active and supportive members to help us to run the community. They bring compassion, knowledge and honesty to the site every day. They share their own cancer experiences and tirelessly answer so many posts from people who are feeling desperate, scared or isolated. Our Champions are the perfect example of why the Online Community is so important – bringing people together and helping them feel less alone. It makes such a difference to get a supportive answer from someone who understands.
- Grow organically. We used to let people start their own groups, but this just led to lots of duplication and the added complexity really didn’t help new people find their way around. It’s best to start with a small number of groups or topics to concentrate activity and only expand when you are sure that there is a need.
- Get support, give support. We’re here to make sure that people get support but we never underestimate the drive to give support. Many members of the community who have been helped will in turn seek to help others – this is a great thing to see happening on the community. We asked the membership via a community survey last year and found out that 57% said that the Community made them feel inspired to give something back – and 29% have also fundraised for Macmillan.
- Welcome everyone. This is much easier to do when you’re small community just starting out – but just as important to us with over 95,000 members. We’re recruiting more online volunteers from the community to help us welcome new members and to quickly show them the groups relevant to their situation and to get them settled in. We also try to make sure that everyone who asks a question gets an answer, even if it’s just to say a quick hello and offer a reassurance that someone has read the post and others will be along later. We feature unanswered posts in a section on the community homepage.
- Start a newsletter. Once a fortnight, we send out a newsletter to everyone who is registered on the community. It’s our roundup of the most interesting discussions, quotes, blogs and pictures from the membership and it lets people know what is going on across the whole community. It’s a way of supercharging peer support by featuring ‘dilemmas of the week’ which encourage a wide range of help, support and advice. The newsletter is also a great way to re-engage casual users by acting as a reminder of all the activity across the site.
- Provide expert help. Be where people are. We created an ‘Ask the Expert’ area on the community to enable members of the community to get advice from various Macmillan professionals. We started small by asking one of our experts to give benefits advice – and then once we proved that there was a need, we gradually expanded the programme to include a specialist thyroid cancer nurse and then other experts. An early highlight of 2016 has been the launch of our Ask a Nurse area – nurses from the Macmillan Support Line are on the community answering around 50 questions a week – it’s a great way to provide an extra level of support on the community. And we also get to work with a brilliant team of nurses.
We’ve just re-launched Macmillan’s Online Community – it now works as a single, responsive site on mobile, tablet or desktop – the team and the community members are working hard to spread the word so that we can reach more people, because no one should face cancer alone. From the day of diagnosis, through treatment and beyond, we’re a constant source of support. So when you need someone to turn to, the community is there.
The Online Community, home to more than 95,000 registered members, can be found at community.macmillan.org.uk.
No one should face cancer alone. Call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk.