Our Efforts
We have a variety of on-going and proposed projects in the arenas of patient, research, and policy advocacy. Our projects are generated by our membership and led by individuals within our community – there is always room for others to get involved.
What we’re working on
Have an idea for a project? Want to support a project? Looking for collaboration with your current or proposed projects? Contact Us!
More Than A Diagnosis
A Quality-of-Life Survey for Individuals with a Diagnosis or History of Cancer
The co-creation and dissemination of an anonymous, online survey to gather QoL impacts and priorities that better inform research, clinical care, and the broader cancer community
Timeline: kicked off in 2023
Status: presented data at SABCS 23, ASCO 24, ASCO Quality 24, MASCC 25
Working on manuscript
From Screening to Survivorship
The co-creation of a shared decision-making (SDM) toolkit that equips patients and care partners with the knowledge, tools, and structured guidance needed to engage in informed, values-aligned decisions from screening through survivorship
Timeline: Phase 1: 2024
Phase 2: 2026
Status:
Co-creating (Design Phase)
Survey Data Freeze 7/30/26
Focus Groups Upcoming
Phase 1: Funded
Phase 2: Seeking funding
Supportive Care
Gaps & Needs
Despite years of conversations calling out the need for “patient-centricity” in healthcare, a significant gap remains between clinical side-effect management and the daily lived experience of patients . The Patient Perspective: Supportive Care Gaps & Needs.
Timeline: proposal stage; partially funded