From what works to what matters: Whole person cancer care and the integrative oncology leadership collaborative (IOLC).
Authors: McManamon Alyssa Claire , Leyh Jenny , Bires Jennifer , Capparella Lisa , Carlson Linda E , Garber Greg D. , Handley Nathan , Karim Safiya , Lee Young Joo , Lopez Ana Maria , Mansky Patrick J. , Nibauer-Cohen Fern , Oyer Randall A. , Paller Channing Judith , Pritt Jody , Souers Jasmine , Stearns Vered , Urban Barbara Paxson , Wadlow Raymond Couric , Jonas Wayne 
Published: May 2024

e13567

Background: In 2021-2022, a two-year integrative oncology leadership collaborative ( IOLC ) was established with a goal to routinize whole person care. Thirteen cancer organizations met virtually 1-2x/month, including community, federal and academic centers. The IOLC defined whole person cancer care, adapted & tested open-source patient intake/PROs, education, and workflow resources from primary care, anchored in “what matters” for patients in oncology, and implemented practice change in their settings. Methods: Based on concepts and tools used in whole person primary care , and, with iterative discussion, the IOLC defined minimal required elements for whole person cancer care. Patient advocates, oncology social workers, physicians & nurses came together to draw from efforts that alleviate suffering in palliative, integrative, supportive, and other forms of (mostly) unreimbursed care. Six cancer survivor-advocate members vetted patient-facing resources. Subject matter experts reviewed topics important for clinical initiatives (e.g. group visit models , patient education resources ), shared best practices and solidified commitments to provide whole person care. To assess outcomes, a post-participation survey was fielded. Results: Minimal required elements (MREs) of whole person care were defined as: 1) inclusion of patient & caregiver voice in programming/care plans, 2) explicitly anchoring to “what matters” to the patient in shared decision making and goals of care (using PROs), and 3) supporting safe choices in complementary & integrative modalities. Challenges faced across organizations were: 1) leadership involvement, 2) patient understanding/engagement, 3) resource availability (time/financial), and 4) team alignment. Adaptation of primary care tools to oncology was successful; 15 “pocket guides” gained 2049 page views in 20 mos (top 3: cannabis 18%, nutrition 13%, patient advocacy 10%) and the American Cancer Society adopted the IOLC resources for distribution in 2024. Multi-institutional success occurred via publications and projects such as retooled nurse navigation, survivorship & wellness programs . Survey response rate was 54% (7 of 13 clinical sites). 89% increased whole person health services following IOLC participation (44% moderately or significantly). 100% reported use of the resources in patient care (55% often, 45% periodically). Conclusions: A definition of whole person cancer care, derived from broad consensus, identified MREs that allowed startup success across practice settings. An inclusive community of professionals & patients furthered whole person care with national impact, partnerships and culture change based on what matters to patients.