#LCSM

Lung Cancer Bloggers Mark World Cancer Day 2016

World Cancer Day Graphic

Thursday, February 4, 2016, is World Cancer Day 2016 — a day to consider how WE CAN fight one of the world’s top killers.

We need everyone to have access to good healthcare. We need better understanding of cancer risk factors and ways to reduce them.  We need better screening and diagnostic tools.  We need better treatments, and at affordable cost.  We need to eliminate barriers to communication, information, and data sharing.  We need better funding and support for patients.

Worldwide, people will be tweeting, blogging and posting on social media about World Cancer Day about a variety of topics, such as the US White House’s new Cancer Moonshot initiative .  Twitter hashtags to watch are #WorldCancerDay and #WeCanICan.

One way to fight cancer is to share stories, information and data online.  Several lung cancer bloggers will take this day to share their thoughts about the connections they have made with others in the lung cancer community.  #LCSM Chat will curate the blogs by adding links to these posts below.

What will YOU do today to fight cancer?

LUNG CANCER BLOGGER WCD POSTS

World Cancer Day — The Silver Lining by Samantha Mixon

World Cancer Day:  My Tribute to Katie by Dann Wonser

World Cancer Day 2016 by Lysa Buonanno

Reflections on a Special Kind of Friendship by Denise Cutlip

World Cancer Day: Honoring My Online Patient Community by Anita Figueras

#LCSM Chat Topic 1/28: What Does the Lung Cancer Community Expect from the New Cancer Moonshot Program?

At the recent State of the Union Address, President Obama struck a bipartisan chord by announcing a new “Cancer Moonshot” program with Vice President Joe Biden serving as “mission control” and leading a charge of renewed efforts to remove perceived barriers to scientific collaboration and achieve unprecedented progress to understand, prevent, and more effectively treat cancers of all types. Vice President Biden has a very personal stake, as his son Beau died of a glioblastoma (a primary brain cancer) in May, 2015. He has been meeting with several leading national cancer experts and representatives from many cancer groups in planning next steps.

The idea of a “moonshot” refers to President Kennedy’s announcement in a 1962 of a national effort to put a man on the moon by the end of the decade. At that time, with Americans perceived to be several steps behind the Soviet space program, this seemed to be a very audacious goal, but it was one that galvanized the nation, especially when it was realized when millions watched Neil Armstrong take that first step in August of 1969. In many ways, the goal of eradicating cancer seems similarly audacious, perhaps especially so in light of the fact that it was 1971, not long after the first moon landing, that President Nixon first declared war on cancer. Notably, there was no clearly defined deadline or timeline with the current effort, though Vice President Biden apparently plans to make this the main focus of his life’s work from this point forward.

At our upcoming #LCSM chat, on January 28, 2016, at 8 PM Eastern, 5 PM Pacific, we’ll discuss what the cancer moonshot program means to the lung cancer community, focusing on these questions:

  • Is eradication of cancer is attainable within years? What are keys to progress? More $$? Leading collaborations? “Big data”?
  • Do you expect cancer moonshot program will narrow funding/research gap for LC vs others, or will it need to compete for attention?
  • If you needed to prioritize one effort for LC, what would it be? Lab research? Prevention? Screening? Treating existing disease?
  • Do you believe a time line to a defined goal is needed, or will prioritization be enough? If a deadline, what endpoint & when?

We look forward to you joining us on Thursday to discuss the implications of the US Cancer Moonshot Program to the lung cancer community. New to Twitter chats? Here’s an easy-to-follow primer.

 

#LCSM Chat Topic 1/14: What Clinical Questions Can We Study to Improve Lung Cancer Treatment Outcomes?

  

  
Our topic for the next #LCSM Tweet Chat on Thursday, January 14th at 5 PM Pacific (8 PM Eastern) is “What Clinical Questions Can We Study to Improve Lung Cancer Treatment Outcomes?” In this chat, moderator Dr. David Tom Cooke (@UCD_ChestHealth) will facilitate brainstorming for clinical trial ideas.

The chat is a continuation of #LCSM Chat’s ongoing Patient Centered Outcomes Research Institute (PCORI) funded project, entitled “Empowering Patients and Their Families to Improve Outcomes That Are Most Important to Them after Surgery and Other Therapies for Lung Cancer.

Patient-centered outcomes research (PCOR) seeks to help stakeholders (patients, their family members, friends and care providers) communicate and make informed healthcare decisions, allowing multiple voices to be heard in assessing the value and efficacy of healthcare options. The last #LCSM Chat tweet chat reviewed highlights of the past year and projections for the future, and our LCSM community identified patient-driven research as a positive from 2015, and more patient-driven research as a prediction for 2016.  

The goal of our project is to formulate and develop a comparative-effectiveness research (CER) project, to answer important questions and needs identified by our #LCSM community. 

What is CER, you ask? CER compares a) two or more options, b) studies the risk and benefits of the options, c) compares options already proven to be effective (so no placebo), and d) assesses which options are better for the population being studied.  

Additional components that can be in a CER question are:

  • Comparing interventions available to patients with lung cancer now
  • Addressing a critical gap in current knowledge of lung cancer
  • Seeking to fill a critical gap in current knowledge, evidenced by inconsistencies in lung cancer clinical practice and decision making
  • Making it likely to improve lung cancer care through an approach that is novel or innovative.
  • Indicating potential for a sizeable benefit of the lung cancer treatment intervention relative to current practice
  • Focusing on outcomes of specific interest to lung cancer patients and their caregivers, and using patient reported outcomes when possible
  • Generating findings that will inform decision making for key stakeholders in Lung Cancer

With the above goals, here are questions that will be discussed during our June 19th Tweet Chat:

T1: What question(s) would you like studied to improve the side effects of #LungCancer treatment? #LCSM

T2: What question(s) would you like studied to improve the recovery and outcomes of patients undergoing #LungCancer #surgery? #LCSM

T3: What strategies can we study to improve screening and diagnosis of #LungCancer? #LCSM

T4: What methods can we study to improve the delivery of #LungCancer care? #LCSM

T5: What other question(s) would you like studied to in the care and Rx of #LungCancer patients? Tell us your idea! #LCSM

This Tweet Chat will be a launching pad for a campaign, separate from the scheduled Tweet Chats, in January and February asking you for your patient-powered CER ideas.  Feel free to tweet ideas (using the #MyLungCATrialIdea) as ideas come to you. Whether you are in the waiting room at your healthcare provider,  watching TV, in a lecture, or reading a scientific article, just pop onto Twitter and tweet your idea. An update chat in March will follow up on the campaign. 

For examples of CER studies funded by PCORI, click here. For examples of CER questions listed by the Institutes of Medicine click here.  

Please join us for #LCSM Chat on Thursday January 15 at 8 PM ET. Remember to add the hashtag #LCSM to your tweets at the appointed hour and follow the stream. Here is more info on how to participate in #LCSM Chat. If you cannot participate in the tweet chat but still want to share your thoughts about the above lung cancer surgery questions, please post your thoughts in the comments below. The #LCSM founders will make sure your comment is tweeted during the chat.

 

#LCSM Chat Topic for 12/17: Reflecting on 2015, Projecting 2016 for the Lung Cancer Community

Some years are bigger than others, and by just about any measure, 2015 was a banner year for the lung cancer community. We saw new drug approvals for a wide range of lung cancer patients, including immunotherapy for patients with both squamous and non-squamous advanced NSCLC, as well as very recent approvals as holiday presents for patients with an EGFR mutation or ALK rearrangement. We saw many important trials in lung cancer become high priorities, a growing use of next generation sequencing to identify new targets, and new data and greater acceptance of plasma testing for mutations as a more accessible means of molecular marker testing.

At the same time we celebrate the advances we’ve made, many of us still feel that the greater promise is for the future, that our successes are only setting the stage for bigger advances. So at the end of every year, it is fitting for us to look back at the key successes but also make predictions and perhaps create a wish list for the coming year.

In that spirit, moderator Dr. Jack West will cover the following provocative questions in our upcoming #LCSM chat on Thursday, 12/17/2015 at 8PM Eastern, 5 PM Pacific:

T1: What do you feel were the key highlights for the lung cancer community in 2015?

T2: What are the leading challenges the lung cancer community still faces for the near future?

T3: What are your predictions for realistic next advances in lung cancer in 2016?

T4: Dreaming big, what’s on your wish list of what you’d love to see for the lung cancer community next year?

New to #LCSM Chat? Check out our chat primer!

Dec17_LCSMchat

 

#LCSM Chat Topic for 12/3: “The Lung Cancer Advocacy Dilemma: Bridging the Smoking History Divide”

The lung cancer community is made up of a very diverse group of people. We come in all shapes, sizes, colors, creeds, and political affiliations. Where else can one sit at the same table with a hunter and a vegan? An atheist and a born-again Christian? A former punk rocker and a politican? The individuals who make up this vibrant community are brought together for one reason: to make things better for people with lung cancer. We are a family of sorts.

As with all families, however, we have subjects that are not comfortably discussed. The lung cancer community is no different. Our family is made up of patients who are never-smokers, former smokers and current smokers. In the minds of the general public, mainstream media and too many healthcare providers, people with lung cancer are the poster children for smoking stigma. How do we address this reality openly and honestly as a community in a way that honors all patients? How do we bridge the divide with respect to smoking history?

These topic questions will guide the conversation:

T1: How do you perceive the divide in the #LungCancer Community between those with smoking histories and never-smokers? #LCSM

T2: Which advocacy messages make the divide worse? #LCSM

T3: How can we heal this divide in the #LungCancer community for the greater good of the advocacy movement? #LCSM

T4: How can we change the general public’s perception of #LungCancer patients without emphasizing never-smokers? #LCSM

We hope you’ll join moderator Deana Hendrickson on Thursday at 5 pm PT, 7 pm CT, 8 pm ET. If you’re new to tweetchats, please read this primer on how to participate in #LCSM Chats.

Please read prior to the chat:

Dear Lung Cancer Patient Who Smoked

Can We Erase Lung Cancer Stigma Without Mentioning Smoking?

Guest Blog: Dear Lung Cancer Patient Who Didn’t Smoke

Profiles in Lung Cancer: Kelli “Cat” Joseph, Survivor 

The Lung Cancer Blame Game – How People Blame the Patients and Patients Blame Themselves 

Are Lung Cancer Patients to Blame for Their Disease?

Let’s Kill the Stigma and Save Lives

David Carr’s death and the stigma of lung cancer

 

 

Follow

Get every new post delivered to your Inbox.

Join 1,172 other followers

%d bloggers like this: