#LCSM Chat Topic 3/8/2018: Cancer Advocacy 101–Patients & Conferences

Chemist Jean Cui at #ASCO17 posters with #ALK & #ROS1 NSCLC patients who thrive on drugs she helped develop

As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences.  On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.

Some reasons for cancer advocates to attend medical conferences are to:

  • Learn more about cancer and treatment options for cancer
  • Get details about new research
  • Meet the top doctors who treat their type of cancer
  • Support an advocacy organization’s outreach booth
  • Network with other advocates, as well as clinicians and researchers
  • Share an advocate’s perspective on a specific topic, sometimes as an invited speaker

As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?

Tools exist to help advocates navigate cancer conferences and understand the content they will see:

If you know of other resources, please share them in the comments on this page or in the chat.

Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:

  • AACR’s ScientistSurvivor Program
    Participants receive travel grants and participate in special educational programs at cancer research meetings.
  • ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
    Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
  • RAN’s Focus on Research Scholar Program
    Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
  • International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
    Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.

Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:

  • T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals?  To the conference?
  • T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
  • T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
  • T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
  • T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?

We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”

#LCSM Chat Topic 5/4 — The PDQ on MTBs: Why are multidisciplinary tumor boards important in #lungcancer?

This is a reblog of a post I wrote on lcsmchat.com.

Lung cancer is a complicated disease.  Diagnosing and treating complex cases can require skills that cross a variety of medical specialties. Larger medical centers and hospitals may decide to discuss complex cases in tumor boards that include physicians that represent a variety of medical specialties.

Our May 4, 2017, #LCSM Chat (at 8pm Eastern, 5pm Pacific) will focus on defining what a multidisciplinary tumor board (MTB) does, who is involved, and why MTB are important in the treatment of lung cancer.

The National Cancer Institute defines a tumor board review as:

A treatment planning approach in which a number of doctors who are experts in different specialties (disciplines) review and discuss the medical condition and treatment options of a patient. In cancer treatment, a tumor board review may include that of a medical oncologist (who provides cancer treatment with drugs), a surgical oncologist (who provides cancer treatment with surgery), and a radiation oncologist (who provides cancer treatment with radiation). Also called multidisciplinary opinion.

Some of the medical doctors with specialized training that might participate in an MTB are:

  • Medical Oncologist: specializes in diagnosing cancer and treating it with medicines
  • Pathologist: specializes in identifying diseases and conditions by studying abnormal cells and tissues.
  • Pulmonologist: specializes in the diagnosis and treatment of pulmonary (lung) conditions and diseases.
  • Radiation Oncologist: specializes in treating cancer with ionizing radiation
  • Radiologist: specializes in diagnosing and treating diseases and injuries using medical imaging techniques, such as x-rays, computed tomography (CT), magnetic resonance imaging (MRI), nuclear medicine, and positron emission tomography (PET)
  • Thoracic surgeon:  specializes in the surgical diagnosis, staging and treatment of cancer in the thorax (chest)

Moderator @JFreemanDaily will lead our discussion using the following questions:

  • T1: What does a multidisciplinary tumor board (MTB) do? Why is it important in #lungcancer treatment?
  • T2: What types of #lungcancer cases can benefit by MTB review?
  • T3: Who should be involved in an MTB? What medical specialties are usually represented?
  • T4: How often does an MTB reach a consensus about diagnosis and treatment recommendations in #lungcancer?
  • T5: What can patients do if their hospital does not have an MTB? What is the role of telemedicine?

Please join us for this valuable discussion. If you’re new to tweet chats, this primer will help.

First-ever NCI Facebook Live for Lung Cancer Awareness Month 11/17 8 pm ET

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Hope you will join the lung cancer community tomorrow 11/17 at 8pm Eastern for the first-ever Lung Cancer Awareness Month Facebook Live event with the National Cancer Institute and the concurrent Lung Cancer Social Media (#LCSM) Chat on Twitter. We’ll be talking about immunotherapy and lung cancer clinical trials.

For more information, check out the Lung Cancer Social Media (#LCSM) Chat blog post for their 11/17/2016 chat.

 

Celebrating Cancer Hashtag Communities and a Moonshot

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.

  1. The Cancer Moonshot Summit happens Wednesday, June 29, in DC and in satellite locations all over the US (see DC agenda at bottom of this post). While several of our members will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1).
  2. The 5th Anniversary of the beginning of Breast Cancer Social Media (#BCSM)—and the beginning of cancer hashtag communities on the web—happens July 4!

Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Mon 6/27:
#BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
–Expanding Clinical Trials
–Enhanced Data Sharing
–Precision Prevention and Early Detection
Ideas generated can be submitted online to the Cancer Moonshot.

Wed 6/29:
Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wed 6/29:
#Hcchat will conduct the official Moonshot chat (use both #Hcchat and #Moonshot hashtags) at noon Eastern Time on the topic “Will the Moonshot lead to the death of cancer?” This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon’s Cancer Act and author of “The Death of Cancer.”

Thu 6/30:
#LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
–Cancer Immunology and Prevention
–Tumor Evolution and Progression
–Implementation Sciences
–Pediatric Cancer
Ideas generated can be submitted online to the Cancer Moonshot.

Thu 6/30:
Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index

Sun 7/03:
#BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future.

Mon 7/04:
5th anniversary of #BCSM and cancer hashtag communities

Mon 7/04:
#BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you’ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/

 AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC


Cancer Moonshot Summit Agenda 1 (CROPPED) Cancer Moonshot Summit Agenda 2 (CROPPED)

Live Tweeting #ASCO16 with @LUNGevity

ASCO twitter logo

This year I’ll be live tweeting the big American Society of Clinical Oncology (ASCO) Annual Meeting June 3-7 as a Patient Research Representative for LUNGevity Foundation. What does “live tweeting” mean? It means I will be using Twitter to share information from ASCO sessions and  perspectives on the meeting in near real time.

I’ll be tweeting from the @LUNGevity Twitter account (along with Dr. Upal Basu-Roy and Katie Brown) and my own account (@JFreemanDaily).  If you want to find me or other tweeps at ASCO, please come to the Official ASCO Tweetup June 4th at 5:45pm in the McCormick Convention Center Plate Room (South Building, Level 2.5 Food Court).  Hope to see you there!

#LCSM Chat 5/5: Know Before You Go—Conference Prep 101

convention

image by Microsoft Office

Lung cancer patients and advocates are increasingly joining healthcare, pharma, government agency and biotech industry representatives at cancer-related medical conferences such as the American Association for Cancer Research (AACR) Annual Meeting in April and the American Society for Clinical Oncology Annual Meeting in June.

Planning ahead for these meetings is essential for getting the most out of your time. The events, which can last several days, often have many sessions happening at the same time in different rooms. In addition to scheduling considerations, the terminology, graphics, and scientific concepts discussed in the sessions can be overwhelming even for seasoned attendees.

Because no one can possibly attend every conference, attendees share the conference experience by posting tweets while at the conference (called “live tweeting”) about significant happenings and new findings. Often, these conferences have specific hashtags–for instance, those attending the ASCO Annual Meeting this year will include #ASCO16 in their tweets. However, live tweeting from sessions presents some challenges, like condensing new concepts into less than 140 characters, and continuing to follow slides while composing tweets.

In our Thursday May 5 #LCSM Chat at 8 PM Eastern Daylight Time (5 PM Pacific), we will share ideas how attendees might prepare in advance to get the most from a medical conference and share their conference experience with others in real time on Twitter. Janet Freeman-Daily will moderate our discussion using the following questions:

  • T1: What tips do you have for getting the most out of a medical conference? How do you prepare?
  • T2: What concepts would be most helpful for patients/advocates to know before attending cancer conferences? Where can they learn these?
  • T3: What tips do you have for live tweeting a medical conference? What kind of live tweets do you value most?

We hope you’ll join #LCSM Chat on Thursday May 5 at 8 PM EDT. If you’re new to tweetchats, please read this primer on how to participate in #LCSM Chats.

Reblogged with permission from the LCSM Chat website.

#LCSM Chat topic 2/25: Communicating patient goals and values for #lungcancer treatment

   

This is reblogged with permission from the LCSM Chat website.

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The best lung cancer care considers the patient’s goals and values when choosing a treatment. However, identifying and communicating those goals is not always a straightforward process for either the care provider or the patient.  

This week’s #LCSM Chat explores the process of communicating patient goals and values. Care providers need to know how to elicit them. Patients (even those who want to leave treatment decisions entirely to their doctors) must be able to identify and express them, and, if need be, initiate a conversation about them.  

Choosing the right treatment and care for a lung cancer patient is a matter of weighing risks of side effects versus evidence that the treatment has a good chance of success. Physical side effects can run the gamut from mildly annoying tummy upset to life-threatening organ failure. Yet sometimes a drug that causes severe side effects might result in cure or prolonged No Evidence of Disease. While the doctor or other care provider can learn about the risks and benefits for specific treatments from medical literature, only the patient knows what risks they are willing to accept to achieve their individual treatment goals. 

Willingness to tolerate risks varies from patient to patient. Some patients (perhaps those with small children) might favor an aggressive new treatment with the goal of living as long as possible regardless of side effects. Others (perhaps those who have additional health problems that would be dangerously aggravated by cancer treatment) may choose to forego active treatment and aim to be comfortable enough to attend a dear friend’s wedding in six months.  

In addition to physical side effects, patients also have financial, logistic, cultural and family concerns. Although it would be wonderful if all cancer patients had sufficient resources to access the most effective treatment options and the best care, we know this is not the case. Some patients must make treatment choices based on their ability to pay or to travel to a treatment site–a cancer center may not covered by the patient’s insurance, or may be hundreds of miles away. Unfortunately, bankruptcy is not a rare side effect of cancer treatment.  

The discussion of patient goals and values must continue throughout a patient’s lung cancer treatment, because patient preferences may change over time. An early stage patient might choose to be aggressive in their first-line treatment in hopes of a cure. Yet that same patient may find that after their cancer has become metastatic and they have had three different aggressive cancer treatments, they hesitate to try another treatment likely to have severe side effects. 

Some patients are comfortable trusting their doctors to determine whether the potential benefits of a treatment are worth the potential side effects, while other patients prefer to participate in shared decision making. Both approaches are valid choices, but in both cases, one would hope that one’s doctors would consider each patient’s goals and values when weighing treatment options.  

However, the process each care provider uses to determine patient goals and values is far from standardized. It is not a skill that has been (or is currently) taught in most medical schools. Sometimes the process doesn’t happen. 

During our chat on February 25 at 8 PM Eastern (5 PM Pacific), moderator Janet Freeman-Daily (@JFreemanDaily) will lead the discussion about communicating patient goals & values for lung cancer treatment using these topic questions: 

  • T1: What are examples of patient goals & values that would be helpful in discussions of #cancer treatment? #lcsm
  • T2: How can we encourage patients (including those who want to leave decisions to docs) to think about treatment goals & values? #lcsm
  • T3: How might care providers solicit patients goals & values for #lungcancer treatment? Are any topics (e.g., cost) off limits? #lcsm
  • T4: How might patients initiate the discussion of their goals and values if their #lungcancer care provider doesn’t ask? #lcsm
  • T5: How can we encourage discussions of goals and values between #lungcancer care providers and patients? #lcsm

We hope you will join the 2/25 chat. Remember to add the hashtag #LCSM to your tweets during the chat so other chat participants can see them. For more info, check out how to participate in #LCSM Chat. If you can’t join us, please leave your comments below.   

References

“Patient-centered: providing care that is respectful of and responsive to in­dividual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”  Institute of Medicine, CROSSING THE QUALITY CHASM: A NEW HEALTH SYSTEM FOR THE 21ST CENTURY, p. 3

Patient-Centered Communication and Shared Decision Making,” National Academies Committee on Improving the Quality of Cancer Care, Delivering High-Quality Cancer Care, Chapter 3.

Looking forward: 2016 AACR Annual Meeting and the Scientist-Survivor Program

Microscope

I recently learned I was selected to participate in the American Association of Cancer Research (AACR) 2016 Scientist-Survivor Program!  I’m excited to be attending the AACR Annual Meeting this April in New Orleans.  Thanks to the Bonnie J. Addario Lung Cancer Foundation for sponsoring my application.
I’m looking forward to networking with researchers as well as meeting advocates for other types of cancers to discuss their work.  I’ll also be presenting a research poster on Lung Cancer Social Media (#LCSM) on Twitter, which offer a unique opportunity to connect with all types of stakeholders in the lung cancer community — patients, caregivers, healthcare providers, researchers, hospitals, pharmaceutical companies, advocacy groups, and insurance payers.  Afterwards I plan to blog about the experience and share some of the exciting research presented at the meeting.
After the meeting, I’m going to have a few days vacation to enjoy New Orleans (which I’ve never visited).  I’ll then take The City of New Orleans Amtrak route to Chicago, followed by another train to Boston.  I’ll arrive just in time to present at another conference (GET 2016) at Harvard the next day! I had originally planned to take the Sunset Limited from New Orleans to LA, but after I was invited to GET my travel coordinator (e.g., hubby Gerry) could not find any place where I could disembark along the way and fly to Boston in time for the conference.  After GET, I’ll take a train to Washington DC, where I’ll be a speaker at LUNGevity’s National HOPE Summit.  Whew!
Glad I have willing housesitters who love (and are loved by) the cats.

NCI & #LCSM Chat present a Google Hangout on Air 11/19 at 2pm ET: “Changing Landscape of Lung Cancer Research & Treatment”

[Reblog of 11/15/2015 content from LCSMchat.com — used with permission]

Last year in November, The National Cancer Institute (NCI) and #LCSM Chat worked together to conduct a Twitter chat on precision medicine in lung cancer treatment.  This year, we’ve taken our collaboration a step further to create a highly engaging, interactive online event.

For Lung Cancer Awareness Month this year (#LCAM15), The NCI and #LCSM Chat are excited to announce we will co-host a one hour Google Hangout on Air on “The Changing Landscape of Lung Cancer Research and Treatment” on November 19, 2015 at 2:00 ETYou can watch the Hangout LIVE online by clicking HERE.

During the Google Hangout, we will also be co-hosting a simultaneous #LCSM Chat on Twitter on the same topic to expand on the discussion.  If you have questions you would like answered by the experts in the Hangout, tweet them during the chat (or before) using the #LCSM hashtag.  You can read about how to participate in an #LCSM Twitter chat here.

Our Hangout on Air will be moderated by #LCSM co-founder Janet Freeman-Daily (@JFreemanDaily), who will share questions submitted on Twitter with our three lung cancer experts:

During the Hangout, Dr. Jack West (@JackWestMD) will moderate the #LCSM Chat on Twitter.  The questions in the chat will reflect the topics to be discussed in the Hangout:

  • T1: What new aspects of lung cancer clinical research are you excited about? What’s new in clinical trials?
  • T2: How is translational research different from clinical research? What new projects in translational research are you excited about?
  • T3: What new directions in basic lung cancer research give you the most hope?
  • T4: How can the lung cancer community help researchers to give us more new treatments sooner?

Feel free to tweet questions of the presenters in the #LCSM tweetchat—just include the hashtag “#LCSM” in your tweet.  NCI social media people will collect the questions from the Twitter feed and feed them to Janet so she can ask them during the Hangout.  If you’re not comfortable with Twitter, just post your question in the comment section of this blog post.  We will make sure your question gets added to the list.

It promises to be a lively and vibrant discussion about current lung cancer research, clinical trials, and future treatment options.  We hope you tune in to the Hangout on Air and/or join the #LCSM Chat on Twitter.  If you aren’t able to join us live, don’t worry — the hangout will be recorded and posted on YouTube shortly after the event, and a Storify of the Twitter chat will be posted within a week.  As usual, you can find transcripts of past #LCSM Chats on our “Schedules and Transcripts” page.

After the 11/19 Hangout is over, we’d appreciate your completing a brief survey to let us know what you thought about the Hangout, and what you would like to see in future #LCSM Hangouts. Click here to take the survey.

Please join #LCSM Chat 10/22 at 8PM ET for “Sharing Your Story: Talking Points for #LungCancer Advocates”

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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 (@brownbeansprout), 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:

  1. Which aspects of your #cancer experience do you include when sharing your story? How do you make it an interesting narrative?
  2. What key facts about #lungcancer do you ensure you weave into your story? Does this change over time?
  3. Any tips for tailoring an advocate presentation to different audiences, article/speech length, or types of media?
  4. 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.

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This content was reblogged from the LCSM Chat website (with permission).