What is Cancer Survivor Social Media and why is it needed?
In 1995, I was diagnosed with acute lymphoblastic leukemia (ALL). The survival rate for my type of disease as the time was around 70% and I underwent a typical 2-and-a-half-year treatment protocol comprised of a cocktail of chemotherapy agents. 22 years later, I found myself standing on a stage in Arusha, Tanzania delivering a TED talk on why cancer survivors should be more involved in research.
By this, I don’t just mean that cancer survivors should consider participating in research studies as many already do, I mean cancer survivors should be involved in designing these studies and indeed helping decide which research should be done.
Between these two formative life experiences, I had returned to school, grown up and studied to become a cancer research scientist. A combination of serendipity, luck and hard work meant that I ended up studying leukemia genetics for my PhD and then bridged into childhood cancer research quite easily. At one point, I took a sidestep to pursue a 1-year project looking at the neurotoxic effects of methotrexate, a common chemotherapy drug used in childhood leukemia and some adult cancers too.
This came from my own personal experience where I had a rare-side effect of the drug while on treatment. I woke up one morning and was paralyzed down my left side. Nobody really knew quite what was going on and I recovered, but the question of why that happened stuck in the back of my head. I ended up doing a research project to find out and uncovered some useful information as to why this side effect may have happened. Two papers have currently been published with this work and a further two are pending.
This got me thinking — if I, as a cancer survivor turned research scientist was able to do this innovative research project, do all cancer survivors have experiences and suggestions that could inform impactful research? The answer is of course yes. But a bigger question is how can we open the channels of communication to facilitate these discussions?
This is increasingly happening in cancer research more generally, although I personally think there is a long way to go. Cancer patients and survivors are now included in some respects at major conferences, invited to meet with scientists and researchers and often given travel and accommodation funding to facilitate their attendance. But this only reaches a small group of people and although their advocacy is vital and admirable, they cannot represent the 17 million cancer survivors in North America alone.
To try and address this, I co-founded Cancer Survivor Social Media (CSSM), a volunteer-run initiative to host monthly Twitter chats facilitated by anyone in the cancer survivor community. These could be survivors, advocates, healthcare professionals or researchers. My co-founder is Dr Jennifer Jones, Director of the Cancer Rehab & Survivorship Program at Princess Margaret Cancer Center in Toronto. She has an amazing research group already looking into many cancer survivorship issues.
We are starting off by hosting a monthly tweet chat #CSSMchat, inspired by several other cancer communities on Twitter which do similarly. Each chat will start with a brief live video from a facilitator talking about their chosen theme. We will then have an hour of conversation centered around 3–5 discussion topics. After this, the facilitator will work with the admin team to write a summary article of the chat. Our first #CSSMchat is on April 24th and is facilitated by Nicole Stout, a physical therapist and specialist in working with cancer survivors. Our next chat in May will be hosted by a cancer survivor.
Hosting a tweet chat is not a unique idea and there are dozens of cancer-specific chats who do wonderful work. But issues that cancer survivors experience are often shared between people who have had treatment for a variety of different cancers. The diversity of expertise from healthcare professionals and scientists required to conduct these studies is huge. The CSSM initiative wants to bring these people together and get them talking. It’s a simple concept, but one which I hope will lead to meaningful change. Inviting everyone to the conversation and facilitating their involvement is an important first step.
