Toward Equitable Innovation in Health and Medicine A Framework (2023) / Chapter Skim
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2 Taking Equity Seriously in Innovation
2 Taking Equity Seriously in Innovation
Pages 31-52
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WHY EQUITY IS IMPORTANT NOW The COVID-19 pandemic revealed inequities in health care and technology both in the United States and globally. The association of death rates and longer-term symptoms with race and socioeconomic status was stark; death rates among people of color, for example, were higher than those among their White counterparts (Hill and Artiga, 2022; Khullar et al., 2023; Magesh et al., 2021)
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. Studies confirmed that pulse oximeters are approximately three times more likely to miss low blood oxygen levels in Black than in White patients, a condition known as hidden hypoxemia (Sjoding et al., 2020; Wong et al., 2021)
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Social structures of race, gender, disability status, sexuality, geographic location, nationality, and socioeconomic status are not mutually exclusive; one's lived experience of inequity typically reflects a combination of multiple factors that interact and shape patterns of penalty and privilege. The reality that people's experiences are shaped by multiple, intersecting social structures demands an intersectional approach to advancing equity (African American Policy Forum, n.d.; Black Feminist Health Science Studies, n.d.; Homan et al., 2021)
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This perspective suggests that institutions, both public and private, can be both incentivized and held accountable to produce systems that magnify and amplify inclusion, belonging, and equity in ways that can better realize the social potential of emerging science, technology, and innovation. This chapter thereby provides the foundation for future chapters that detail the contours of what a governance infrastructure for emerging science, technology, and innovation that is grounded in a concern with equity might look like and identify opportunities for advancing toward that goal.
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. Suffice it to say at this point that there is strong justification for both public and private actors, including expert and professional bodies, as well as those lay communities most impacted by the consequences of inequitable technology development, to be involved in the development of governance mechanisms that center equity in the medical science and technology system.
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Another finding is that the goal of incorporating equity into technology innovation has been contentious and difficult to sustain, and small progress in specific areas has been vulnerable to rollbacks. For most of the past eight decades, other values have guided innovation governance -- namely, a commitment to laissez-faire innovation, deference to the pursuit of profit and speed in innovation, and a willingness to allow market and consumer forces to play the leading role in determining who benefits from science and technology innovation.
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It does so while considering equity not in punitive or mandatory terms, but as an unmet need that is recognized as much by practitioners as by historically disenfranchised and underserved communities. DEFINITION OF EQUITY: WHAT EQUITY IS, AND WHAT IT IS NOT This report makes the case that equity is a foundational structural principle upon which a governance framework for emerging science and technology must be based.
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Thus, no single definition of equity is adequate to cover the multiple existing and potential manifestations of inequity in science and technology innovation in the health care arena. Accordingly, a governance framework for medical innovation cannot be a one-size-fitsall model.
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First, the operationalization of equity involves intentional upstream design choices on the part of a technology developer that explicitly consider the eventual downstream users and consumers. Second, while the two equity scenarios display technology's role in promoting equity, their contexts differ with respect to the technology's ownership or use: in the image with bicycles, equity is considered in the context of a userspecific or user-owned device, while the crosswalk image displays the use of technology to promote equity in the context of a shared, publicly used resource.
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The images also reflect how equity relates to overlapping goals of advancing fairness and justice and serve the common good. SOURCE: Robert Wood Johnson Foundation, June 30, 2017.
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For example, including historically disenfranchised communities among study participants without having clear terms for how they will share in the benefits of the technology being studied does not address equity concerns. Addressing inequity requires an adequate understanding of the role of power relationships in creating inequities.
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CASE STUDY: EQUITY IN RELATION TO DISABILITY Histories of injustice and marginalization are critical to understanding the imperative for and goals of a governance framework for emerging science and technology in medicine. Just as no single definition of equity adequately covers all of the ways in which inequity can arise in the process of science and technology innovation, there is no single criterion for determining which individuals or groups are affected by such histories.
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Attitudes toward disability started changing during World War II as previously unemployed Americans with disabilities were hired and worked on the home front alongside women, while men without disabilities fought overseas (Linton, 1998) ..Over the ensuing 20 to 30 years, other forces stimulated transformative social changes, including the independent living movement, increasing interest in self-help rather than professional direction, the large-scale deinstitutionalization of persons with various disabilities, and nationwide campaigns for civil rights and equal opportunity for racial and ethnic minorities and women (Linton, 1998; Shapiro, 1994)
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, Section 1557, amended Section 504 of the Rehabilitation Act and several other statutes to provide additional protections against disability discrimination in health care services. Disparities in Health Care Despite this half century of civil rights protections, Americans with disabilities experience disparities and inadequate services across the health care continuum, from preventive care to home- and community-based services (Iezzoni et al., 2022a)
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. Universal Design One lever to guide equity efforts is the concept of universal design -- the basic principle that as people design products, procedures, places, policies, or other services, they consider the full range of people who might use or interact with what they design (University of Washington, 2022)
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APPLYING EQUITY PRINCIPLES IN TECHNOLOGY DEVELOPMENT AND INNOVATION A conceptual understanding of what equity means is a prerequisite for applying equity principles in practice. To inform a framework for centering equity in the development and governance of emerging science, technology, and innovation in health and medicine, it is helpful to consider the different types of equity considerations that emerge.
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CHAPTER CONCLUSIONS Clearly, equity is a vital and urgent concern in society broadly, and it is of particular relevance in the health sphere. The committee's examination of what equity is and is not, the ways in which inequities emerge and persist in the context of health technology development and use, and the ethical imperative to remedy those inequities led to the following conclusions: Conclusion 2-1: Equity is a foundational concept that must underlie any governance framework for emerging science and technology in health and medicine.
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Clinical Science 102:715-719. Black Feminist Health Science Studies.
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2022a. Have almost 50 years of disability civil rights achieved equitable care?
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2021. Executive Order 13985: Advancing racial equity and support for underserved communities through the federal government.
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2021. Analysis of discrepancies between pulse oximetry and arterial oxygen saturation measurements by race and ethnicity and association with organ dysfunction and mortality.
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