Policy & Practice | December 2021

research corner By Daniel Stein

New SOCI Report Highlights Importance of Consent and Trust to Improve Health Related Data Sharing, Outcomes, and Equity

A s I started writing this, I thought a lot about how to deliver the following message without sounding hyperbolic or boastful: The report that Stewards of Change Institute (SOCI) has just published, titled “Modernizing Consent to Advance Health and Equity,” 1 is potentially a very big deal. Then I read a quote from Karen DeSalvo, Google’s Chief Health Officer, and thought I couldn’t explain it any better. So here’s what she said in September 2021, at the 35th Annual Plenary of the international Health Level 7 (HL7) data exchange standards organization. “As we’re moving into this next generation of adding more complexity to data sources . . . it is incumbent on us to really step up the game and make sure that we have true informed consent and that we have an appreciation for how people can be educated about who is seeing their data and when …We’re going to have to sort out a way to create an interoperability between public health and social care systems in particular.” DeSalvo—the former head of the federal Office of the National Coordinator for Health Information Technology 2 (ONC)—wasn’t referring to our report, of course, since it hadn’t yet been released at the time she spoke. But her words precisely described our objectives in conducting this work. They included: n Empowering individuals (e.g., patients, clients, customers) to have greater control over who can access their personal data, when, and for what purposes;

What is This “Scan” Report? SOCI’s latest publication is the culmination of several months of examination of consent-related policies and practices across the United States, along with numerous interviews with organizational leaders and subject matter experts; a review of relevant literature, research, and resources; and other activities designed to provide information and insights about consent processes in the United States today. The subtitle of the report tells the tale: “A National Scan of Key Technologies, Legal Issues, and Promising Practices.”

n Building relational trust between those who receive services, especially “People with Lived Expertise” who are most impacted, and the professionals who provide them; n Advancing information-sharing across systems and domains (e.g., health care, social services, education) through significantly more effective consent practices; and n As a result of the previous three

objectives, broadly improving outcomes related to health, well being and equity, especially for underserved communities.

Photo Illustration by Chris Campbell / Shutterstock

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