Encoding Equity in Clinical Practice and Research
The Encoding Equity Alliance is committed to driving change in clinical research and practice, identifying inappropriate use of race in algorithms and guidelines, redesigning more accurate and equitable decision tools, and collecting and communicating evidence to advance health equity.
Launched in 2024, Encoding Equity is an alliance of diverse healthcare leaders designed to increase awareness of the misuse of race in clinical research. Led by CMSS and generously supported by the Doris Duke Foundation, the Alliance engages individuals and organizations across medical, research, funding, publishing, and technology sectors to improve and advance health equity in clinical research design and decision-making.
Reconsidering the use of race in clinical research design and decision-making can produce more equitable health outcomes for all patients.
Audience:
This challenge demands all hands on deck. Individuals and organizations who can catalyze change include:
- Funders (government and foundations), who can incentivize research behavior.
- Medical Societies who create guidelines, algorithms, and clinical guidance for practice.
- AI/ML Community which can develop tools to assess bias and fairness in algorithms.
- Publishers who inform and incentivize researchers, and can codify advances.
- Researchers who can ensure that race is appropriately used in current and future clinical research.
- Patient Groups who advocate for better care, access, and support.
- Individuals, because advancements in research and care ultimately affect everyone.
About the Program:
There is growing consensus that using race as a biologic factor can be erroneous and harmful to patients. The Encoding Equity Alliance aims to reconsider the way race is used in clinical research design, ensuring that all patients experience the best possible health outcomes.
A national focus on driving equity on this issue is long overdue, so we’re working together to ensure that equity is encoded in algorithms which reflect unbiased and valid evidence. Our goals include changing the way in which race is considered in research design and ensuring that patients – especially those who have been harmed by biased algorithms – experience the best possible health outcomes.
Value:
We envision a future where the appropriate use of race in research design and clinical guidance will drive toward equity – a future where the tools that guide patient care are informed by rigorous methods and strong evidence to prevent misuse of race as a biologic construct. This is a future where more equitable clinical decision-making tools lead to more equitable health outcomes.
Acknowledgement
CMSS is incredibly grateful to the Doris Duke Foundation for their support of the Encoding Equity Alliance, which will enable us all to accelerate change more urgently and comprehensively than any one organization or group of stakeholders can.
Contact:
Ndifreke Ikpe, MHA, Civic Science Fellow
As a convener of medical societies, CMSS is uniquely positioned to bring the clinical and research communities together to foster collective action and amplify impact. The additional focus brought by the Encoding Equity alliance structure will enable us to accelerate change more urgently and comprehensively than any one organization or group of stakeholders can. We seek to engage and activate more individuals and organizations across the medicine, research, funding, publishing and technology sectors to share in designing better tools for medicine.
– Helen Burstin, MD, MPH, CMSS CEO
Press Release
2024 Convening & Report
In June 2024, the Council of Medical Specialty Societies, Doris Duke Foundation, and National Academy of Medicine co-convened almost 300 leaders in-person and online from medical societies, AI/ML, research, patient groups, philanthropy, and government to discuss how race is used in clinical algorithms and opportunities for collaborative strategies to accelerate change.
Key learnings from the convening and the final report are available at https://encodingequity.org/ttcc-key-learnings/.
2023 Convening & Report
In June 2023, Council of Medical Specialty Societies, in partnership with the Doris Duke Foundation, Gordon and Betty Moore Foundation, and National Academy of Medicine, invited thought leaders across medicine, research, technology, patient advocacy, and policy to explore current field efforts, challenges, and timely opportunities to bolster actions for more rigorous consideration of race in the design, implementation, and monitoring of clinical algorithms.
The following key steps were identified:
- Adapt: Develop strategies to rapidly adapt problematic algorithms
- Principles and Guidance: Principles and guidance for the field
- Evaluate: Identify research methods, standards, and data to evaluate algorithms
- Implement: Identify implementation approaches
- Disseminate: Disseminate best practices and provide guidance to major organizations
- Monitor: Develop approaches to monitor algorithms for bias
Read the report developed to address the impact of including race in clinical algorithms and the optimal approach to algorithm assessment: