RATIONALE: Realizing that the benefits of the current revolution in biology and oncology would be enhanced by vigorous public support, for the past twenty years, the UCSF Breast Oncology Program (BOP) has implemented comprehensive strategies focused on leveraging advocacy engagements. To help transform the conduct of clinical and translational research, advocates support a wide range of NCI sponsored Specialized Programs on Research Excellence, (SPORE) and Physical Sciences and Oncology Center (PS-OC) Cancer Center projects, as well as multi-site grants sponsored by Department of Defense (DOD), Komen, California Breast Cancer Research Programs (CBCRP), Stand Up to Cancer (SU2C), and Translational Breast Cancer Research Consortium (TBCRC). Applying core principles that forge synergy with NCI Advocacy Research Working Group Recommendations: strategic innovation, collaborative execution, evidence based decision-making, and ethical codes of conduct, researchers and advocates interact across a broad spectrum of partnership modes at various levels of intensity. Participating in four areas: 1) research and programmatic support, 2) education and outreach, 3) policy and strategy, and 4) representation and advisory, UCSF breast cancer advocates are at the forefront of efforts to revamp translational research processes. For example, advocates involved in grants meet on an ad hoc basis with the study investigator and team. Infusing the patient lay perspective into discussions, trained research advocates vet hypothesis, define strategic priorities, address research challenges, and incorporate innovative science and study design into research projects/clinical trials. Importantly, promoting cross-sector and trans-network collaboration, advocates catalyze change in research practices by identifying systematic barriers to research efficacy, effectiveness, and expediency.
CHALLENGE: As champions of precision medicine, evidence based practices, Bayesian statistics, adaptive trial design, biospecimen standardization, biomarker validation, improved test result reproducibility, and informed consent reform, advocates are driving change in research practices as well as in FDA initiatives leading to new regulatory and interpretative mechanisms. Moreover, forging credibility, advocates now have a dramatic presence as authors in scientific papers, presenters at scientific conferences, voting members in scientific advisories, cooperative groups, data safety monitoring boards, planning committees, protocol/peer review committees, and informed consent working groups. Yet, despite the growing momentum of advocacy in the support and reform of clinical and translational research, collateral challenges remain. Because advocacy efforts often aim for outcomes that are hard to measure, capture, and operationalize, unique quantitative and qualitative approaches are needed to systematically assess the impact of advocacy messages and activities. Lessons learned from successes and failures will allow us to continuously optimize efforts and promote best practices to other UCSF advocacy groups.
PLAN & METRICS FOR SUCCESS: Three innovative methods are being developed specifically to respond to advocacy’s unique measurement challenges:
1. A static table will be used to create an interactive model for measuring progress in real time.
2. Stakeholder surveys that gather advocacy stakeholder perspectives and feedback will be used to assess the extent to which researchers support advocacy involvements and whether the support is changing over time.
3. Logic models and systems mapping approaches will be developed by a committee of researchers and advocates to monitor performance, address challenges, and identify “best practices” and key entities to guide infrastructure improvements.
Arming stakeholders with the tools to make advocacy activities more transparent, recommendations more targeted, and outcomes more impactful, participants will formally assess the extent to which advocacy processes are improving the conduct of clinical and translational research.
JUSTIFICATION: Collaborative team science provides a starting point for comprehensive change and advocacy activities are being looked at as a shining example of how research advocacy will help spur medical innovation, democratize science, and expedite the incredible potential of future investments in bioscience. To sharpen and shape the vision for capacity building and bi-directional mentoring and transnetworking opportunities, advocates and other stakeholders will participate in two workshops specializing in evaluation and strategy development for advocacy and policy change efforts.
COST: A total budget of 50K is requested: Project coordinator 24K; Advocacy Training ProjectLEAD 5K; Workshops: 2 UCSF Workshops on Advocacy Impact Metrics 12K; Infrastructure: Training Materials and Modules for UCSF Outreach 9K.
COLLABORATORS: Susan Samson, Linda Vincent, Susie Brain, BOP science advocates, Hope Rugo (clinical lead PS-OC), Sarah Goins (coordinaor BOP), Laura van ’t Veer (Leader BOP), Susanne Hildebrand-Zanki (Associate Vice Chancellor Research), Elizabeth Boyd (Associate Vice Chancellor Ethics and Compliance)
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