#LCSM Chat Topic for 11/5: How do we move the needle on #lungcancer?
Happy Lung Cancer Awareness Month 2015!
As #LCAM15 begins, LCSM is thinking about what actions the lung cancer community should take to improve quality of life and treatment outcomes for lung cancer patients. What would be the best way to “move the needle” on lung cancer?
If you could choose the top issues that LCSM stakeholders (patients, caregivers, healthcare providers, researchers, advocates, funders, regulators, and healthcare payers) need to address for lung cancer, what would you choose?
- Improve LC awareness and dispel stigma
- Train patients and caregivers to share stories
- Publicize patient faces and stories
- Increase media coverage
- Improve patient care experience
- Educate patients, healthcare providers, and public on how to be engaged/enabled/empowered patients
- Educate patients, caregivers, and healthcare providers about networking in patient communities
- Train patients and caregivers to ask necessary questions
- Educate healthcare providers about the power of engaged/enabled/empowered patients
- Promote shared decision making
- Encourage healthcare providers to elicit and honor patient values and preferences
- Develop patient decision aids for treatment options
- Support healthcare provider training on shared decision making
- Offer appropriate survivorship care supports
- Provide early palliative care
- Educate patients, healthcare providers, and public on how to be engaged/enabled/empowered patients
- Increase availability of new, effective treatments
- Negotiate affordable drugs costs
- Support payment models that ensure all patients receive best possible care regardless of location or resources
- Optimize research study design
- Bring more patient voices into clinical trial design
- Facilitate collaborative IRBs and central biobanking
- Increase speed of regulatory approvals and access
- For treatments
- For genomic and molecular biomarkers testing
- For devices
- Fund clinical research to validate treatments
- Increase high value preclinical research
- Increase availability of research funding
- Make more tumor tissue and biospecimens available to researchers
- Increase open access and data sharing of results
- Increase clinical trial accrual
- Educate patients and public about clinical trials
- Assist patients in finding clinical trials
- Assist patients with travel to trials
- Improve access to quality care
- Promote remote or in-person second opinions
- Increase awareness of staging and treatment guidelines
- Increase availability and knowledge of molecular testing and targeted therapy
- Increase knowledge of immunotherapies
- Improve provider access to multidisciplinary teams and expert consults
- Standardize staging investigations
- Standardize surgical metrics (eg, number of lymphnode stations sampled)
- Increase access to minimally invasive surgical techniques (eg, VATS)
- Improve lung cancer screening
- Provide access to low cost lung cancer screening
- Educate public about lung cancer screening
- Research LDCT screening criteria beyond NLST
- Explore other early detection technologies
- Address risk factors
- Increase research into risk factors
- Reduce environmental exposure to carcinogens
- Reduce behavioral exposure to carcinogens
- Something else not mentioned?
In the #LCSM Chat on November 5 (8 PM ET, 5 PM PT), moderator Janet Freeman-Daily will lead our discussion of this topic using the following four questions.
- T1 What issues are causing the greatest barriers to improving quality of life and outcomes for patients who have lung cancer?
- T2 What actions would have the greatest impact in resolving these issues?
- T3. What stakeholders would you like to see involved in tackling each issue? Which one(s) should take the lead?
- T4 What steps will YOU take as an LCSM stakeholder to help move the needle on lung cancer QOL and outcomes?
For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat.
#LCSM Chat 10/22 at 8PM ET–Sharing Your Story: Talking Points for #LungCancer Advocates
As Lung Cancer Awareness Month (November) grows nearer, patients and advocates become more focused on how to raise awareness of our disease. But what should we say to have the most impact? What “talking points” and tips do successful advocates use in writing, interviews, and public speaking?
The October 22 #LCSM Chat at 8 PM ET (5 PM PT) will discuss the most effective ways to share our patient and caregiver stories as we work to raise awareness of our disease in the media, online, and in person. Although our focus will be on lung cancer, the concepts will be applicable to advocates for any cancer or serious disease. Our moderator will be Janet Freeman-Daily, who has spoken to patient groups, industry, researchers, medical meetings, and the President’s Cancer Panel. Other experienced advocates such as LUNGevity’s Katie Brown (@LUNGevityKB), lung cancer blogger Tori Tomalia (@lil_lytnin), and breast cancer survivor Casey Quinlan (@MightyCasey) will also share their knowledge.
These topic questions will guide the conversation:
- Which aspects of your #cancer experience do you include when sharing your story? How do you make it an interesting narrative?
- What key facts about #lungcancer do you ensure you weave into your story? Does this change over time?
- Any tips for tailoring an advocate presentation to different audiences, article/speech length, or types of media?
- How do you make contact with potential speaking, online and print publication opportunities?
For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat.
#LCSM Chat 10/8: Be the Change for #LCAM15
November is just around the corner! The #lcsm community will spend our October 8 chat (at 8 PM ET, 5 PM PT) discussing our plans for #LCAM15 (the Symplur-registered healthcare hashtag for Lung Cancer Awareness Month 2015). Janet Freeman-Daily (@JFreemanDaily) will be moderating.
This year during #LCAM15, @lcsmchat will be highlighting patients and the research that’s helping us stay alive. Each day we will post a link to a lung cancer clinical trial and a picture of someone who has had lung cancer. The pictures will be posted with two hashtags, #LCAM15 and #ThisIsLungCancer. In addition, the November 19 #lcsm chat will focus on lung cancer research and (hopefully) feature several lung cancer researchers talking about their work.
We will also be posting general info about lung cancer, clinical trials, resources for patients and caregivers, and infographics with facts about lung cancer. As in previous years, tweet-sized facts and links to pages of facts on lung cancer advocacy organization sites will be available on the webpage #LCAM Lung Cancer Facts.
Please feel free to share any and all of this on Twitter and other social media.
Patients, caregivers, advocates, healthcare facilities, clinicians and researchers can help raise awareness of lung cancer research during #LCAM15. Here are some posting ideas–remember to use the hashtag #LCAM15 (and #lcsm if you have room). We will be collecting all the #LCAM15 tweets in an archive after November ends.
- Share a picture of a lung cancer survivor, a researcher in the lab or a clinician with a patient (with permission, of course).
- Post a link for the clinicaltrials.gov listing or other info about a current clinical trial. (If you’re concerned about whether the information is current or a possible conflict of interest, email the trial listing link to jfreeman.wa at gmail dot com–Janet is a patient advocate for the lung cancer SPORE at University of Colorado, and will vet the trial listings before posting them).
- Share a link to an online video in which a doctor shares hopeful info about current lung cancer research and treatment.
- Post a link to a recent news article about good clinical trial results, funding for clinical trials, or lung cancer drug approval.
- Post a link to a patient resource offered online by a lung cancer advocacy organization.
Our discussion topics during the October 8 chat will be:
- T1: What characteristic, picture or article about #lungcancer survivors would you suggest we highlight on #lcsm during #LCAM15?
- T2: What information or resource about clinical trials (or specific clinical trial) would you suggest we highlight on #lcsm during #LCAM15?
- T3: What #lungcancer facts, information, or patient resources would you suggest we highlight on #lcsm during #LCAM15?
- T4: What else would you suggest #lcsm, patients, advocates, or others do during #LCAM15 to raise awareness of #lungcancer?
For a primer on how to join #LCSM chat, check out how To Participate in LCSM Chat.
#LCSM 
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