Policy & Practice | December 2021

ONC within the U.S. Department of Health and Human Services. The scan activities themselves, including the writing of our new publication, were funded by the Robert Wood Johnson Foundation (RWJF). By coincidence, the Foundation just released its own new report relating to information sharing, titled Charting a Course for an Equity-Centered Data System . 7 This represents a major new initiative for RWJF, including an initial invest ment of $50 million to address the equity challenges of cross-system data sharing within public health. The Foundation’s findings and recom mendations focus on: n Changing how we tell stories about the health of people and communities so equity informs meaningful narrative change. n Prioritizing governance of our data infrastructure to put equity at the center. n Ensuring that public health measurement captures and addresses structural racism and other inequities. To all of that, SOCI and our partners say, “amen.” And we hope that our own collective work, on consent and other relevant issues, contributes to achieving those goals. Editor’s Note: Stewards of Change previously published this article as a blog, available at https://stewardsofchange.org/ november-15-2021 Reference Notes 1. https://stewardsofchange.org/13479-2 2. https://www.healthit.gov/ 3. https://www.cdc.gov/socialdeterminants/ index.htm 4. https://www.healthit.gov/sites/default/ files/privacy-security/ecm_finalreport_ forrelease62415.pdf 5. https://hub.nic-us.org/groups/ project-unify/csu 6. Application Programming Interface 7. https://www.rwjf.org/en/library/articles and-news/2021/10/rwjf-commission releases-roadmap-for-an-equity-centered

participation of PwLEs at every step of reform, it cannot be certain that any enhancements—to consent processes or other changes affecting vulnerable populations—will truly meet their needs. Indeed, the risk is that PwLEs won’t even fully engage in an upgraded system, however well intentioned, if they don’t believe it’s designed to help them. The voices we heard during the interviews for our report spoke as one on this count: The singular best way to address that complicated reality, born of long-standing institutional racism and growing socioeconomic disparities, is to create relationships and otherwise build trust. And a crucial component to achieving that aim is to ensure that the most impacted people are central to every phase of governance, planning, and implementation. Our Consent Service Utility In addition to its other objectives, the consent scan report also adds to the body of knowledge SOCI and its collaborators are using to define and design an innovative Consent Service Utility (CSU). 5 The CSU proof of concept is a highly replicable, open source, open-API 6 architecture we’re developing to demonstrate how it is possible to accelerate the secure, “computable” sharing of information across multiple systems (e.g., health care, behavioral health, social services, education). Our approach will make open source consent tools and processes quicker and easier to implement, and that shift will reduce many of the hurdles and much of the friction that currently inhibit broad data sharing and interoperability. Most important, the CSU promises to improve care coordination, which will lead to better outcomes—and underserved, under resourced communities will be the biggest beneficiaries. The CSU is part of our broader Project Unify and, along with the scan, is among the consent-related projects SOCI is currently conducting. They all build on initiatives developed by governmental and private organizations for more than a decade, largely instigated and supported by the

We embarked on this effort, along with dozens of collaborators nationwide, because individual consent is an essential trigger for sharing a broad range of information that health care and human services providers should have from multiple domains—often called the Social Determinants of Health (SDOH) 3 andWell-Being—in order to improve care coordination andmove toward more equitable, holistic, and person centered care. In other words, we strongly believe that modernizing consent (which is still mostly siloed and paper based), would significantly accelerate progress onmany other fronts. The last broad look at consent in our country was undertaken in 2014, when the Mitre Corporation produced Electronic Consent Management: Landscape Assessment, Challenges, and Technology 4 for ONC. That landscape has obviously changed considerably over the ensuing years, so our report is intended to provide a more up-to-date snapshot. In addition, we widened the lens beyond Electronic Consent Management’s singular focus on consent’s role in health care to include an array of complex consent-related issues relating to social and human services, education, and SDOH as well. Voices From the Community:Trust is the Key Most of our scan activities focused on the nuts and bolts of modernizing consent; that is, examining and analyzing the technologies, legal issues, processes, and promising practices that are involved. It’s critical to say, however, that while those elements are essential, they are not the keys to success. Rather, it’s clear that the pivotal factor for making sustained progress is to dramatically, systemically increase the authentic involvement of “people with lived expertise” (PwLEs), an admittedly imprecise term describing the individuals who benefit the least from the status quo and who stand to gain the most from efforts to make health care and social services more effective and equitable. A section of our report titled “Voices from the Community” includes interviews that speak eloquently to these issues.

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Without the ongoing input, experiences, and hands-on

Daniel Stein is the President of the Stewards of Change Institute (SOCI).

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