Equitable Consent

The Equitable Consent Working Group aims to increase the number of underrepresented minorities that participate in biomedical research so that advances in precision medicine are equitably distributed across people from different ancestries, cultures, and age groups. For many reasons, medical diagnostics, drugs, and devices often aren’t tested on a wide variety of patients, which can lead to decreased efficacy or increased side effects in some subpopulations.

With the goal of diversifying biomedical research participation, the Equitable Consent Working Group is developing a website that will feature background information, toolkits, best practices, and other resources about equitable participation in research for biomedical research stakeholders including research sponsors, research staff, potential and existing research participants, and health care providers who may refer patients to studies.

CIAPM staff are in the process of generating and curating content, and engaging pharmaceutical companies, academics, patient advocacy groups, and other organizations to identify needs, determine the scope of information presented, and map out a dissemination plan. If you are interested in contributing to the Equitable Consent project, for instance, by having a CIAPM staffer attend your organization’s meeting, please email CIAPM@opr.ca.gov.

Data Integration

California is rapidly entering a new era in the integration and application of health and administrative data for evidence-based decision-making for public agencies, clinics, social services, and communities. For example, Governor Newsom’s signature on AB 133 puts California on the path to building its first-ever, statewide Health and Human Services Data Exchange Framework by June 2024. Informed by a Stakeholder Advisory Group, the framework will entail a single data sharing agreement and universal set of policies to govern the exchange of and access to health information among health care entities and public agencies. 

The CIAPM Data Integration Working Group grew from the Advisory Council’s priority to pursue greater awareness and incorporation of the social determinants of health (SDOHs) in healthcare decision-making. The working group is actively connecting with and formulating a pilot project to support California’s ongoing efforts, particularly to represent and incorporate researchers’ priorities for improved community health outcomes using a precision medicine approach.  

Staff have so far collected guidance from workshops, meetings, and interviews of experts in data science, precision medicine research, community information exchanges, government, industry, and nonprofit organizations. Working group members are assessing opportunities for accelerating the sharing and application of discovery data from California’s world-class researchers, especially in alignment with CIAPM’s ongoing support of researchers advancing the science of health impacts of Adverse Childhood Experiences (ACEs) and toxic stress. Feedback, recommendations, connections, and information are all welcome at CIAPM@opr.ca.gov.

Forthcoming call for candidates: Science Officer position

We will soon be opening applications for a new Science Officer that will manage CIAPM’s demonstration projects over the next several years. Competitive candidates will have a background in a scientific research field relevant to precision medicine, familiarity with California state government policy processes, and exceptional organizational and communications skills. More information about the position will be sent out on our email list, so stay tuned and share the announcement with anyone you believe may be interested!

Capitol Collaborative on Race and Equity

Over the last 14 months, CIAPM has been a part of the Capitol Collaborative on Race and Equity (CCORE), a racial equity capacity-building program for state government employees. The 2020-21 cohort concluded in late October. 

We will continue to embed four key takeaways:

• Transactional vs. Transformational – Transactional changes improve conditions but do so within existing structures and policies, even when those structures are harmful. Transformational policies and ideas seek to change the underlying structures so the gains to a community are long lasting. 
• Root cause analysis – In early 2021, each team at the Governor’s Office of Planning and Research participated in a guided exercise to identify the root causes of key indicators for racial disparities in their policy areas. CIAPM determined that persistent underrepresentation of minorities in biomedical research was a key indicator, and that inadequate consenting processes and recruitment strategies in clinical trials were a root cause. This exercise solidified the mission of the Equitable Consent Working Group.
• Spectrum of Community Engagement – The spectrum outlines modes of community engagement around policy development, from marginalization to ownership. True community ownership extends beyond collaboration on any particular project; it means a community will retain capacity and resources after the project ends. CIAPM is considering how the community groups with which we engage are enriched in the long term.
• Affirm, Counter, Transform – CIAPM-funded research seeks to reduce health disparities, including the seven collaborative ACEs projects launched in 2021. CCORE’s training on Affirm, Counter, Transform (ACT) language has guided our messaging: affirming shared values, directly countering harmful narratives about race, and transforming the status quo with solutions.