Co-creation of a Shared Decision Making Toolkit
Shared Decision Making is a process often used to describe the ideal process of communication between patient and care team for treatment decision making. But being an active participant in the shared decision making process is a skill.
And the worst time to learn a new skill is under duress.
Goal of the Project:
To co-create a pan-cancer 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
Outcome of the Project:
A comprehensive, equity-centered SDM toolkit — supported by clear educational resources — that improves patient and care partner understanding, strengthens patient–provider collaboration, and enables more informed, personalized, and meaningful healthcare decisions even prior to diagnosis
Project Leads
Stacey Tinianov, MPH
ACE Founder; Executive Director
Jill Feldman
ACE Survivorship Chair
Core Co-Creation Team
Mike Abrams became involved with the Lymphoma Research Foundation, where he supported the Foundation’s efforts to pass oral chemotherapy parity legislation at the federal level. He was responsible for coordinating meetings between members of Congress and lymphoma patients, letters to the editor campaigns, and advocate recruitmentand education activities. In October 2014, he was co-recipient of the Ellen Glesby Cohen Leadership Award as Massachusetts LRF. In 2018, he joined the Alliance for Clinical Trials in Oncology, as the patient research advocate for lymphoma, while serving on the Patient Advocate Committee.
Shruti Agarwal, PhD, MBA, is an oncology educator and strategist focused on patient self-advocacy and bridging gaps between patients and physicians. A former pharma leader and cancer caregiver, she translates oncology evidence into practical, real-world tools that improve communication and decision quality across the cancer care continuum.
Julie Clauer is a Stage IV colorectal cancer (CRC) patient in active treatment since diagnosis in March 2018. She is Education Director for COLONTOWN, a Patient Advocate on the NCI Colon Cancer Task Force and consults on trial design and patient communication.
She is a career marketer with an MBA from Northwestern University and BS from Vanderbilt University.
Stephanie (Stef) Gayhart is a registered nurse who became a fierce patient advocate after being diagnosed with Tongue Cancer in 2019.
Stef has experience in critical care, clinical education, innovation, navigation, and survivorship. She has a Master in Healthcare Innovation and is certified in Trauma-Informed Coaching. Her advocacy efforts span policy, research, and community.
Gloria Okwu is a metastatic breast cancer advocate. She works at the National Institute for Cancer Research and Treatment, Technical expert to the WHO Global Breast Cancer Initiative and Member of Nigeria’s National Cancer Control Plan. She is Vice President; Network of People Impacted by Cancer in Nigeria, founder-Gloria’s Cancer Foundation.
Nicole Normandin Rueda, LMSW, transforms her oncology social work background and personal caregiving journey into powerful advocacy as Communications Director at Patient Empowerment Network. Also serves as Board Secretary of Cancer Survivorship & Supportive Care Professionals Network, she champions health equity through accessible, evidence-based education. 2025 “40 Under 40 in Cancer” honoree.
Annamaria Scaccia is a writer, artist, and one-kidney bodybuilder who has survived both kidney cancer and thyroid cancer by 40 years old. She uses her experiences to support and empower all cancer survivors through education, awareness, community building, and fundraising initiatives. Annamaria specializes in peer-to-peer advocacy, patient-centered research, and educational content.