What’s New?
Here’s what is going on in the Advocate Collaborative right now
Are you attending and/or presenting at an upcoming conference or workshop that might be of interest to other ACE members. If so, please let us know so that we can spread the word!
ACE Speaks on Bidirectionality of Social Media at COSMO In the last month, ACE spoke on a panel at the 2nd Collaboration for Outcomes Using Social Media in Oncology (COSMO) conference in Providence, RI on the bidirectionality of social media. Panelist was Stacey Tinianov and ACE members Allison Rosen, Ginny Mason, and Donna Short were in attendance at the meeting. Board member Dr. Maryam Lustberg also presented at the meeting.
Stacey Tinianov presents poster, Measuring What Really Matters: Advocacy-Led Co-Creation and Accrual of a Pan-Cancer QoL Survey, at the ASCO Quality Care Symposium on behalf of ACE collaborators including Jill Feldman, Dimpy Shah, Kelly Shanahan and Janice Cowden (Click here to see the poster.) This poster focused on the co-creation methodology used when designing, developing, and deploying the More Than a Diagnosis: A Quality-of-Life Survey for Individuals with a Diagnosis or History of Cancer.
ACE Working Group Meetings
Research Advocacy
Improving the way that advocacy and advocates are brought into the research process, interacting with research content and collaborators, sharing leading practices across cancer types. Led by Gitte Joergensen
meets the 4th Monday of every month @ 2pmPT / 5pmET
Patient Advocacy
Sharing leading practices on direct patient support, education, resource availability, and representation. Led by Roberta Albany and Rod Ritchie
meets 4th Wednesday of every month 2pmPT/5pmET/8amAEST
Metastatic Advocacy
Sharing leading practices in metastatic advocacy work, identifying gaps and potential solutions across all types of advocacy to benefit those living with metastatic cancer. Led by Barbara Bigelow
meets 1st Thursday of every month @ 2pmPT / 5pmET
Communications
How we talk about who we are, what we are doing, and how to get involved; social media; website; blog; etc. Led by Allison Rosen and Bob Riter
meets the second Monday of every month @ 4pmPT / 7pmET
Policy Advocacy
meets: TBA
Would you like to join one of our working groups? We’d love to have you! Please contact us to volunteer or for more information.
Advocate Spotlight Blog
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Taking Answers Home: Patient Advocates at the 2024 AACR Annual Meeting
https://www.aacr.org/blog/2024/05/03/taking-answers-home-patient-advocates-at-the-aacr-annual-meeting-2024/: Taking Answers Home: Patient Advocates at the 2024 AACR Annual Meeting -
Advocate Collaborative Partners with CSC to Recruit for Cancer Cachexia Study
https://www.aacr.org/blog/2024/05/03/taking-answers-home-patient-advocates-at-the-aacr-annual-meeting-2024/: Advocate Collaborative Partners with CSC to Recruit for Cancer Cachexia Study
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Advocate-BREAST80+: A Comprehensive Patient and Advocate-Led Study to Enhance Breast Cancer Care Delivery and Patient-Centered Research in Women Aged ≥80 Years
An Advocate-led Study on treatment decisions for those with metastatic HER2+ breast cancer
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Advocate-BREAST80+: A Comprehensive Patient and Advocate-Led Study to Enhance Breast Cancer Care Delivery and Patient-Centered Research in Women Aged ≥80 Years
Advocates for Collaborative Education is now a 501c3