This week I caught up with Chris Lewis, patient activist extraordinaire.
Over a decade ago Chris was diagnosed with stage4 Mantle Cell Lymphoma (a rare blood cancer) and given six months to live. Aggressive chemotherapy followed plus a stem-cell transplant from an unrelated donor via the Anthony Nolan charity.
The next few years was a rollercoaster of hospital stays as Chris battled medical complications. He saw first-hand how disjointed the cancer support sector is and so he started to address the issues he found most concerning through his blog – Chris’s Cancer Community.
This has become the most popular cancer blog in the UK and Chris is frequently invited to speak around the world about his experiences. Most recently, he has set up simPal, a unique charity that gives free phones and sim cards to anyone affected by cancer.
This is Chris’s social media story.
Hi Chris, I’d like to start off by asking you to tell us something about the role that social media plays in your work.
CL: I am the founder of Chris’s Cancer Community and Co- Founder of SimPal, the only charity in the world providing free mobiles and pre-paid simcards for people affected by cancer. None of this would have been possible without social media. My work is known across the globe and I do several international speaking trips every year. I am now the most influential cancer patient in the UK.
When did you start using social media – what prompted you to get started?
CL: My illness started in 2007, and I had absolutely no knowledge of social media. My health was unreliable and I was in and out of hospital. I began to see how poor support was for people living with cancer and wanted to know if it was only me who felt like that. I have a business background and started asking around. Friends of mine created a very simple blog to start with. My ‘community’ started to grow, my work was winning awards, and the rest as they say is history.
It’s wonderful to see how far you’ve come since those earliest beginnings. You now have a presence on several platforms, which is your favourite?
CL: No competition here, it is Twitter! I use Facebook and Instagram too but Twitter works best for me. Short and sharp engagement is key. I have a reasonable following which is continually growing. Although cancer is a big part of what I do, I like to mix things up a bit and speak on current issues, whatever they might be. Also my big love of football! I have been using social media for more than 7 years now, and wherever I am speaking in the world, there are people in the room who follow me, and that is a nice feeling!
Which topics hold your interest the most on social media?
CL: I am particularly interested in the subject of ‘patient engagement’ As a business guy I was shocked when entering the cancer sector, how little effort was put into this. It seems it was mostly box ticking. We are customers of the system, in whichever country you live. Rarely do we have and serious role in designing systems and tools to help us. I don’t know any business that does not talk to its ‘customers.’ Surely they are the most important part of your work? I used to do many twitter chats but as my work has exploded I have so little time to get involved. I find I must limit myself on social media or the entire day can be gone before you know it!
Do you have any advice for others who are just starting out with social media?
CL: Firstly establish what you want to achieve on social media! Many people are purely there because they feel they have to be. Ask yourself what does success look like for you? Most people are on there to ‘sell’ something, be it a product or a service, but just like in real life it is how it is done is the real key. Unless you listen and engage with others they won’t with you. Remember to listen more and speak less, that way you will learn quickly. Finally, we all started with no followers!!
Oh that’s so true Chris!
So, I like to end these interviews by asking for a favorite quote. Do you have one you’d like to share with us now?
I think kindness is my number one attribute in a human being. I’ll put it before any of the other things like courage or bravery of generosity or anything else. Kindness—that simple word. To be kind, it covers everything to my mind. If you’re kind that’s it.
― Raold Dahl
We sure could do with more kindness in the world – thank you for the reminder Chris! And thank you for taking the time to share your social media story with us.
This post is part of an ongoing conversation that explores how patients, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here.