Empowering Patients, Informing Practice: A Community Study of Complementary Cancer Therapies
Writing sample excerpt · Christine Mineart, MPH
IRB protocol for a UCSF Osher Center / Commonweal, CancerChoices collaboration, 2025. This document uses the HDFCCC institutional template; the sections below are the ones I authored, with the template's structural and instructional language removed.
Abstract
This community-driven project will collect and analyze community evidence on integrative/complementary therapies used by cancer survivors in the San Francisco Bay area. By documenting experiences, treatment choices, and self-reported outcomes, we will gain valuable community insights to create educational resources that will best serve community interests. This project responds directly to community need for reliable information on complementary therapies amidst misinformation online. The findings will help bridge the gap between clinical research and community interests, ultimately improving the cancer experience through better understanding of which integrative/complementary approaches are of most interest for the community.
Background on Community Use of Complementary Therapies
Among cancer survivors, 66.5% reported ever using complementary and alternative medicine (CAM) and 43.3% had used CAM in the past year. ASCO and the Society for Integrative Oncology have published clinical guidelines on integrative therapies in cancer care, a positive step forward for evidence-based clinical practice. While these published recommendations for the delivery of integrative oncology have enhanced the services available to patients overall, it is essential to understand the unique needs of individuals with cancer undergoing treatment and their journey through survivorship. Discerning the prevalence and patterns of complementary therapy use among people with cancer is important to inform clinicians and community education efforts on the needs of the communities they serve.
A growing body of literature now demonstrates the impact of integrative oncology approaches, such as diet and exercise, on not only cancer- and treatment-related symptoms but also survival outcomes. This project brings together CancerChoices, a program of the non-profit Commonweal, and the Osher Center at UCSF, through an HDFCCC Community Research Pilot grant. Observations in the Commonweal community illustrate that many individuals actively use complementary therapies alongside conventional cancer treatments to improve treatment outcomes and quality of life. Patients and their caregivers frequently express overwhelm in discerning reliable information about complementary therapies, leaving significant gaps in the evidence needed for informed decision-making.
Background on the Community-Based Survey Approach
An increase in health misinformation concerning alternative cancer therapies is also on the rise, and understanding the community's adoption of therapies with potential risks is important for clinicians to address in practice. For example, CancerChoices.org compiled the published evidence for mebendazole and fenbendazole (approved as anthelmintics) as off-label cancer therapies, which is sparse. This page receives over 20,000 visitors each month, an indicator of the strong interest in a therapy made popular by social media and online cancer forums, highlighting a need for educational efforts to better inform patients about how to access trustworthy information. Additionally, many patients hesitate to discuss complementary practices openly with their oncology care teams, which can contribute to fragmented and suboptimal care.
By learning directly from the community through a community-based survey and interviews, clinicians and researchers can better understand the behaviors and needs of the cancer community. Additionally, it will bring clarity to the gap between patient practices and oncologists' awareness of their patients' complementary therapy use.
Study Rationale
To address these critical needs, our collaborative pilot study aims to capture patient experiences and outcomes through a community-informed, mixed-methods research design. The project will focus specifically on documenting community use across key categories of complementary cancer therapies, including dietary supplements, off-label pharmaceuticals, mind-body practices (e.g., mindfulness, yoga), specialized diets, body-based practices (e.g., acupuncture, massage therapy), and other lifestyle modifications (e.g., exercise, sleep interventions). By employing surveys and in-depth qualitative interviews, we will capture patient-reported data concerning quality of life indicators, management of treatment-related symptoms and side effects, and overall treatment outcomes.
Risk/Benefit Assessment
This study involves minimal risk to participants. Potential risks include:
Psychological discomfort when discussing cancer experiences
Breach of confidentiality
Time burden of participation
Direct benefits to participants:
There are no direct benefits to individual participants, although some may find value in reflecting on their experiences with complementary therapies.
We will offer expert-led webinars to inform and educate the community about complementary therapies; these will be free for all participants to join.
Study Objectives and Endpoints
Overall Study Objective: To document and analyze the patterns of complementary therapy use among cancer survivors in the San Francisco Bay Area, with the goal of generating community-based evidence to inform educational resources and clinical practice in integrative oncology.
Primary Objective
To characterize the prevalence, types, and patient-reported effectiveness of complementary therapies used by cancer survivors
Endpoint(s)
Types of complementary therapies utilized currently and in the past; mean rating of perceived effectiveness for each therapy used; mean rating of perceived benefit for managing side effects, improving treatment outcomes, and improving quality of life
Time Frame
One time point. Survey conducted during months 1–9 of the study.
Secondary objectives included examining patterns of patient-provider communication about complementary therapy use, assessing patient-reported quality of life using the validated FACT-G7 survey tool, and understanding decision-making processes for selecting complementary approaches.
Exploratory objectives included exploring differences in complementary therapy use patterns across cancer types, treatment phases, and demographic characteristics, and exploring the correlation of quality-of-life scores with complementary therapy usage.
