The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 133... ...
The engagement of current and envisioned federal capacities and infrastructures, as described in Chapter 1, would be essential components of efforts to develop and act on the recommendation areas described below. Examples of key federal partners include but are not limited to • the White House Steering Committee on Equity; • the Interagency Working Group on Equitable Data; • agency equity teams within agencies involved across the research, development, oversight, and delivery system in health and medicine; • new and existing agencies and initiatives advancing innovation, such as the National Institutes of Health's (NIH's)
|
From page 134... ...
TABLE 5-1 Summary of Recommendations Recommendation Actions Desired Outcomes Establish a National • Foster leadership and coordination to • A U.S. innovation system that Vision and Priority align innovation with ethical principles translates emerging science Setting Body that include equity.
|
From page 135... ...
making and action throughout the • Adopt resulting equity science methods, technology life cycle. metrics, and benchmarks to assess and monitor technology implications.
|
From page 136... ...
-- Articulate near-, intermediate-, and long-term priorities for aligning emerging biomedical science, technology, and innovation with the governance framework for equity. To inform the White House Steering Committee on Equity, the EBI Task force should issue annual reports describing progress toward achieving these priorities, challenges encountered, adjustments made, new opportunities, and resources needed.
|
From page 137... ...
In addition, the VA provides health care to a substantial population and conducts key biomedical research, thus offering a key opportunity to pilot changes in practices, incentives, or other governance levers that could drive more equitable outcomes. Similarly, many nonfederal partners and stakeholders should be involved in activities to establish an equitable biomedical innovation ecosystem.
|
From page 138... ...
In formulating priorities and goals, the EBI Task Force should solicit input from additional stakeholders in emerging science, technology, and innovation through calls for input, listening sessions, virtual discussions, or other mechanisms. Potential topics for the EBI Task Force to discuss include • how to better incorporate equity science developed under Recommendation 5 into science and technology assessment across all phases of the innovation life cycle; • how to better support and implement the significant and sustained community partner ships in emerging science, technology, and innovation called for in recent Executive Order 14091 and Recommendation 4; and • which information is most useful and effective to collect as input for the annual progress reporting called for in this recommendation, how to collect it, and how to implement the reporting.
|
From page 139... ...
The report thus provides a framework for enhancing development and governance in health and medicine guided by five core imperatives: • broadening participation and sharing responsibility to empower a wider range of stakeholders; • aligning incentives to encourage equitable decision making; • determining how inequities develop along technology innovation life cycles and taking responsibility for mitigating them; • crafting timely guidance for pursuing equitable ends; and • sharpening ongoing, iterative oversight and evaluation along innovation life cycles. Incorporating these imperatives into the ecosystem of emerging science, technology, and innovation will require a culture that reflects the values, expectations, and norms guiding how those involved in the innovation ecosystem understand their roles and responsibilities -- in the conception of new research ideas, the design and conduct of research, the development and scale-up of resulting products and technologies, performance assessment, and patient and consumer use.
|
From page 140... ...
Coalitions of university technology transfer offices, law firms, philanthropic organizations, and investment companies can convene with science and technology innovators, patient and com munity organizations, and social science and humanities experts to develop further normative guidance on practices in technology licensing that could be applied in assessing ethical and equity considerations associated with new intellectual property and in making use of enhanced equity and public benefit provisions in licensing and start-up agreements. Actions by Multiple Stakeholders to Advance This Recommendation Incorporation into Training • The convening activities identified above can create a module on equity for all stages of inno vation in health and medicine for incorporation into existing training programs.
|
From page 141... ...
Although adherence to such provisions is difficult to moni tor and enforce, they nonetheless raise awareness of equity as an important consideration. Periodic Technology and Portfolio Assessments • Stakeholders throughout the innovation process can adopt equity science methods, metrics, benchmarks, and data systems to assess the implications of a given technology and/or an overall portfolio of technologies, and use these assessments to inform decision making (see Recommendation 5)
|
From page 142... ...
Those who fund and oversee innovation in health and medicine should incentivize their grantees, researchers, and partners to assess periodically an emerging technology's alignment with equity, focusing on choice points during the technology life cycle and on governance actions that can be taken to mitigate any misalignments that may arise. Assessment areas should include the following: • Funding and research approvals: Whether research and analysis methods mitigate biases and incorporate a diverse range of relevant expertise and perspectives, includ ing input from and partnerships with directly affected communities.
|
From page 143... ...
for public–private partnerships in which government investment serves to derisk private investment in equity-focused ventures. • Technology transfer offices can use terms and provisions in licensing and start-up agree ments that facilitate public benefit and equity in biomedical innovation (e.g., requirements for nonexclusive or royalty-free licensing; triggers for compulsory licensing; provisions for discounted or free use of some applications; and model provisions related to benefit shar ing, such as for communities that contributed biological materials and data)
|
From page 144... ...
• These efforts should draw on the robust equity science methods, metrics, benchmarks, and data systems developed under Recommendation 4. Cost and Coverage Decisions • Public and private purchasers and health care insurers can conduct or require equity analyses to inform their decision making.
|
From page 145... ...
RECOMMENDATION 4: Empower diverse communities to participate in the innovation system. Conveners appropriate to stages of the innovation life cycle in health and medi cine should bring together experts and practitioners in effective community engage ment, participatory research and codesign, inclusive design principles, and participa tory technology assessment, along with leaders of model engagement partnerships, to analyze lessons learned from these efforts and identify best practices, standards, and tools for designing and maintaining bidirectional engagement with members of mar ginalized or underserved communities.
|
From page 146... ...
At the same time, although topically focused convening and guidance are needed, implementing this recommendation will collectively expand the network of leaders active in this area. Dedicated and systematic efforts should enable members of histori cally underserved populations to participate in the innovation process, including by • supporting historically underserved communities in expanding their capacities to par ticipate in innovation, such as by identifying problems of interest and establishing and engaging in community-based and external partnerships, including serving as co–principal investigators on projects and authors on research papers; • encouraging researchers to recognize the contributions of affected communities in the development of intellectual property, and helping them identify tangible models and prac tices for doing so; • incorporating diverse voices in program prioritization and in the development of equity science methods, metrics, and benchmarks (see Recommendation 5)
|
From page 147... ...
. DEVELOPING EQUITY SCIENCE A governance framework for more equitable development and governance of emerging science, technology, and innovation in health and medicine requires credible methods, metrics, and benchmarks for assessing equity throughout the system in a purpose-driven, contextually sophisticated manner, enabling both anticipatory analysis of inequities that may arise and retrospective analysis of efforts to mitigate inequities.
|
From page 148... ...
RECOMMENDATION 5: Invest in developing equity science for technology innovation. The National Institutes of Health and the National Science Foundation should partner with philanthropic organizations to support the development of a robust, multi disciplinary equity science that builds on current efforts to develop equity-relevant metrics while establishing a wider range of qualitative and quantitative methods, 1 https://beta.nsf.gov/od/oia/eac/analytics-equity-initiative (accessed June 30, 2023)
|
From page 149... ...
Equity science methods, metrics, and benchmarks developed through these programs should • incorporate the development of associated data collection and reporting systems and data quality standards; • enable iterative review of the effectiveness of governance policies that have been imple mented, the shifting landscape of technology, and the potential for new implications and impacts to have emerged; and • support responsive course correction of governance decisions, including incentives and disincentives. As equity science is developed: • Stakeholders throughout the innovation process can support system-wide change by adopting the resulting methods, metrics, benchmarks, and data systems to assess equity relevant implications of technology innovation decisions.
|
From page 150... ...
Innova tion stakeholders in professional, government, and community settings should strongly consider developing equity playbooks providing strategies, key questions, and advice targeted to particular roles in the technology life cycle, types of inequity, or specific areas of emerging science and technology, including context-specific guidance on incorporat ing equity science into technology assessment (see Recommendation 5)
|
From page 151... ...
. • Illustrative Examples and Tables: Examples and boxes provided throughout this report illus trating the impacts of failures to consider equity implications sufficiently and highlighting some of the organizations, efforts, and strategies that can be used to advance equity in the innovation life cycle (throughout the report)
|
From page 152... ...
• Partner with biomedical innovation stakeholders to engage proactively with underserved communities. Funders of emerging • Mandate ethics training that • Expanded methods, metrics, and science, technology, incorporates an understanding of benchmarks for assessing alignment and innovation equity.
|
From page 153... ...
• When relevant, require postmarket analyses to identify whether inequities have arisen, and take action to address them. Health care payers • Include equity science metrics and • More equitable access to new and delivery analysis in purchasing, use, and technologies and more equitable stakeholders coverage decisions.
|
From page 154... ...
• Context-specific guidance on equity • Consider how information learned tools and strategies targeted from the development and use of a to particular fields, roles in the technology provides new conceptual innovation life cycle, or equity understanding or new problem considerations. formulations or identifies future research needs.
|
From page 155... ...
https://www.rwjf.org/en/ insights/our-research/2021/10/charting-a-course-for-an-equity-centered-data-system.html (accessed June 30, 2023)
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.