#LCSM Chat topic 3-Oct-2019: The Path to Research Advocacy

Please join the #LCSM community and moderator Janet Freeman-Daily (@JFreemanDaily) for our next #LCSM Chat on Thursday, October 3, 2019, at 8 pm Eastern Time (5 pm Pacific) to discuss “The Path to Research Advocacy.”

Cancer patients and their loved ones who have the skills, interest, and energy may become patient advocates for their disease. Their activities might include providing support and resources to other patients, acting as liaisons between patients and clinicians, raising awareness and educating others about their disease, and engaging in fundraising activities for advocacy and research.

Some patient advocates take the next step and evolve into research advocates. Research advocates are volunteers with a personal connection to cancer who are passionate about helping translate research findings into meaningful outcomes for patients and their families. They provide the perspective of their collective patient community in order to help research focus on the questions most important to patients and create studies that more likely to improve outcomes.

The National Cancer Institute (NCI) defines a “Research Advocate” this way:

A person who serves as a link between patients and scientific researchers. Research advocates help patients understand scientific information and research findings that may help them. They may also bring a patient perspective on research activities to scientific advisory boards and committees.”

Our October 3, #LCSM Chat will discuss research advocacy for all cancer types using the following questions:

  • T1: What is cancer research advocacy, and how is it different from patient advocacy?
  • T2: What skills do research advocates need to advance research?
  • T3: What have research advocates done to support cancer research?
  • T4: What can research advocates do in their communities to support research?
  • T5: What training and resources are available for research advocates?

We are excited to have you join us for this #LCSM Chat.  Please join us this Thursday and 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.

AACR Scientist↔Survivor Program (SSP) all cancers Various AACR conferences (USA) American Association for Cancer Research
CISN Webinars all cancers online Cancer Information Support Network (CISN)
Focus on Research Scholar Program all cancers ASCO Annual Meeting, Chicago, IL, USA Research Advocacy Network (RAN) and American Society for Clinical Oncology (ASCO)
WECAN Academy all cancers TBD Workgroup of European Cancer Patient Advocacy Networks (WECAN)
IASLC STARS lung cancer World Conference on Lung Cancer (various countries) International Association for the Study of Lung Cancer (IASLC)
Project LEAD breast cancer La Jolla, CA, USA National Breast Cancer Coalition (NBBC)
SABCS and Patient Advocate Program breast cancer San Antonio, TX, USA Alamo Breast Cancer Foundation (ABCF)
Advocate Development Programme myeloma and AL amyloidosis Various conferences (Europe) Myeloma Patients Europe (MPE)

#LCSM Chat Topic 09/19/19: World Lung (#WCLC19) Wrap-Up

Please join the #lcsm community and moderator Brendon Stiles (@BrendonStilesMD) for our next #LCSM Chat on Thursday, September 19th, 2019, at 8 pm Eastern Time (5 pm Pacific).

Clinicians, researchers, patients and advocates from all over the world attended the 2019 World Conference on Lung Cancer (#WCLC19) from September 7-10 in Barcelona.  This annual event, hosted by the International Association for the Study of Lung Cancer (IASLC), is a showcase for all of the latest news and advances in lung cancer.  The meeting is somewhat unique in that it is multidisciplinary in nature and covers the breadth of the disease, from risk factors and prevention, to screening for lung cancer, to staging and molecular classification, to surgery and radiation therapy for early stage disease, and to immunotherapy, targeted therapy, and novel therapeutics for patients with advanced cancer.

WCLC19 offers a truly breathtaking and diverse collection of invited talks and original scientific presentations.  Better yet, it is a chance to bring everyone interested in lung cancer together in one place to learn from each other and to foster future collaborations.  Increasingly the meeting has also embraced the role that patients and advocates should have at the table during scientific meetings.  This year, the IASLC unveiled their STARS program (Supportive Training for Advocates on Research and Science), training designed to increase the ability of patients and advocates to provide accurate scientific translation to their peer groups and to provide the patient perspective to lung cancer research and policy.

The meeting and the STARS program were both amazing.  Several themes emerged at #WCLC19, which are all reflective of the intense interest in improving lung cancer outcomes throughout the world.  With that in mind, #LCSM Chat this week will cover some of the highlights of #WCLC19 using the following questions:

  • T1. Lung cancer screening was a hot topic at #WCLC19. What is new in that area?
  • T2. What is important to know about molecular testing? Is universal testing coming?
  • T3. What was new at #WCLC19 regarding immunotherapy?
  • T4. Are there any exciting new targets being investigated in lung cancer?
  • T5. What was STARS and how can patients/advocates get more involved at scientific meetings?

We are excited to have you join us for this #LCSM Chat.  Please join us this Thursday and 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.


#CANCERSM Chat topic 14-Aug-2019–Finding Balance: “Cancer Life” vs. “Real Life”

In lieu of #LCSM Chat in August 2019, please join a collaborative #CancerSM chat with other cancer hashtag communities on Twitter (#gyncsm #bcsm #btsm #mmsm #ayacsm) about Finding Balance: ‘Cancer Life’ vs. ‘Real Life’.”  Note this is a different day and time than usual for #LCSM Chat–this chat will be Wednesday, August 14th at 9pm ET. Learn more at http://gyncsm.blogspot.com/2019/08/joint-cancersm-chat-finding-balance.html .


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