By Andrea Borondy-Kitts; Laronica Conway; David T Cooke, MD; Janet Freeman-Daily; Deana Hendrickson; Matt Katz, MD; and H Jack West, MD.
The #LCSM Chat on Thursday, July 16, at 8 pm Eastern Time (5 pm Pacific) will be an early celebration of our second birthday. The #LCSM hashtag was first used by @subatomicdoc (Matt Katz, MD) to represent Lung Cancer Social Media on June 22, 2013, and the first-ever #LCSM Chat occurred on July 25, 2013. Seventy-two patients, advocates, caregivers, family members, educators, healthcare providers, and researchers participated.
The first #LCSM Chat topic question was “It’s our community. What do you hope to get out of #lcsm chat?” The answers were diverse and wide-ranging, reflecting the interests of a broad-based lung cancer community: education and information (about diagnosis, treatments, survivorship, and side effects), understand needs of patients and families, inspiration, involvement, support, community, resources, learning about latest research, facilitate social media (#SoMe) provider-patient partnerships, encourage others to reach out, facts about lung cancer, reduce stigma, expert recommendations, promote sharing of ideas, empowerment.
It was a revelation—no other forum allowed all stakeholders in the lung cancer community to communicate directly with each other.
Two years later, many of these goals are being realized. Our chat topics and participants continue to evolve as more stakeholders become aware of the power of social media.
Members of the #LCSM Chat Founders and several long-term members took the time to reflect on this milestone and share their thoughts:
Lung Cancer Caregiver Deana Hendrickson (#LCSM Chat co-founder):
When I started tweeting in 2012, there wasn’t much about lung cancer on Twitter. It was pretty lonely out there for this frightened daughter. Today, #LCSM is a welcoming virtual meeting place for every facet of the lung cancer community. #LCSM provides the support, fellowship, science, collaboration and sense of unified community that simply did not exist two years ago. So far, so good. Now, let’s work even harder to make it better!
Lung Cancer Caregiver Andrea Borondy Kitts:
I joined Twitter because I wanted to go to a tweet chat on lung cancer. How did I find out about the tweet chat? From Squanch (Janet Freeman-Daily) on the Inspire website. Until that day in July 2013 I had never done anything with social media — not Facebook, not LinkedIn and definitely not Twitter. I thought Twitter was for teenagers. My first tweet chat “hooked” me. I have become a fierce advocate of social media for health advocacy, disease management, patient empowerment and activation, and most of all, for teaming of all healthcare (in this case, lung cancer) stakeholders. Working together, patients, caregivers, oncologists, surgeons, radiologists, advocacy organizations, medical associations, and “industry,” we have made a difference.
#LCSM is my community; for advocacy, for staying current on the latest research and information on lung cancer, for help with projects and for emotional support during rough moments. Although I have never met most of my #lcsm friends, I do consider them friends. I have never been disappointed when I have asked for help or reached out to one of the members.
Key #LCSM accomplishments include the petition asking CMS to cover lung cancer screening signed by over 8000 people, the tweet chats to gather information for PCORI grants, the November lung cancer awareness month lung cancer fact of the day tweets, the expertly moderated bi-weekly tweet chats on critical topics with well researched background summaries and links to additional information to name a few.
In 2 years #LCSM has gone from fledgling community to a role model for others to follow.
Thoracic oncologist H. Jack West, MD (#LCSM Chat co-founder):
Like most 2 year-olds, #LCSM is on the move, but it’s still taking toddling steps. We should be rightfully proud to have built a new community that engages patients, caregivers, health care professionals, and even industry-affiliated people who consider themselves part of a global lung cancer community. We have successfully launched and created #LCSM as the “go to” way to reach the most broadly inclusive group touched by lung cancer, and we have fostered something that truly feels like a nascent community.
But a two year-old is still very immature, and that birthday or anniversary is more notable for the potential in the future. For #LCSM, most of us could do better, starting with me, in ensuring that we share what would be interesting to others by adding those few characters that make it possible to reach the broader community. We should be better about RT-ing, sharing the ideas of others and commenting on the exciting developments in lung cancer that are being introduced by others. And we should make each #LCSM chat a celebration of the community that feels like a shared experience with common goals.
Lung cancer is a huge problem affecting literally millions around the world. The magnitude of the problem also comes with a comparable magnitude of opportunity to make an impact. As we wish #LCSM a happy 2nd birthday, we should be proud of what we’ve started but focus on what we still need to do in order to realize the potential for a community where voices from all corners of the lung cancer world speak together.
Thoracic surgeon David Cooke, MD (#LCSM Chat co-founder):
I’ve been extremely proud to see news reports and stories from patients and their families, who discovered #LCSM and found it helpful for them as they move forward through a difficult process. My happiness for the growth of #LCSM is similar to the joy I felt when I removed the stage I lung cancer from our first patient with lung cancer discovered by our lung cancer screening program.
Radiation Oncologist Matt Katz (first to use the #LCSM hashtag):
#LCSM epitomizes collaborative advocacy for people that truly need it. The community has successfully brought many people together with the common purpose of improving lung cancer care. The ability to heal and help through connection is remarkable; whether it’s support during treatment or grieving #lcsm has done so much. And there is more we can do.
Lung Cancer Caregiver Laronica Conway (#LCSM Chat co-founder):
Simply put, LCSM is like family. When Deana asked if I would be interested in participating, I had no idea what that meant. All I knew was that it would allow me an opportunity to communicate with others who knew and understood my pain, my emotions and my fears. After mom died in 2012, I needed the LCSM community (the sisters and brothers I’ve never met.) I’ve received education, support and guidance…just like a family. It feels good to have each other’s backs. And I am proud to have been a part of the first two years of LCSM. Happy Anniversary to my LCSM family!
In celebration of our second birthday, Moderator @JFreemanDaily will lead the #LCSM Chat in discussing the following topic questions:
- T1: What changes/progress have occurred in #lungcancer awareness, treatment and advocacy since #lcsm began 2 years ago?
- T2: What do you see as significant accomplishments of #LCSM in the past 2 years? How has #LCSM influenced the #lungcancer community?
- T3: What aspects of #LCSM have been the most meaningful to you in the past 2 years?
- T4: What would you like to see happen within #LCSM in the next year?
Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. Hope you’ll join us to celebrate this milestone in Lung Cancer Social Media!
And stay tuned to our #LCSM Chat website–supported in part by the Patient Centered Outcomes Research Institute (PCORI), big things are coming on lcsmchat.com!