By Daniel Stein 

As I started writing this blog, 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,” 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 (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:

  • Empowering individuals (patients, clients, customers, etc.) to have greater control over who can access their personal data, when and for what purposes;
  • Building relational trust between those who receive services, especially “People with Lived Expertise” who are most impacted, and the professionals who provide them;
  • Advancing information sharing across systems and domains (healthcare, social services, education, etc.) through significantly more-effective consent practices; and
  • As a result of the previous three objectives, broadly improving outcomes related to health, well-being and equity, especially for underserved communities.

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 U.S., 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 U.S. today. The subtitle of the report tells the tale: “A National Scan of Key Technologies, Legal Issues and Promising Practices.”

We embarked on this effort, along with dozens scores of collaborators nationwide, because individual consent is an essential trigger for sharing a broad range of information that healthcare and human services providers should have from multiple domains – often called the Social Determinants of Health and Well-Being – in order to improve care coordination and move 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 on many 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 for the 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 healthcare to include an array of complex consent-related issues relating to social/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 healthcare 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.

Without the ongoing input, experiences and hands-on 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 longstanding 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. The CSU proof of concept is a highly replicable, open-source, open-API architecture we’re developing to demonstrate how it is possible to accelerate the secure, “computable” sharing of information across multiple systems (healthcare, behavioral health, social services, education, etc.).

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 importantly, 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 over a decade, largely instigated and supported by the Office of the National Coordinator for Health Information Technology (ONC) within the US 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. By coincidence, the Foundation just released its own new report relating to information sharing, titled Charting a Course for an Equity-Centered Data System. This represents a major new initiative for RWJF, including an initial investment of $50 million to address the equity challenges of cross-system data sharing within public health. The Foundation’s findings and recommendations focus on:

  • Changing how we tell stories about the health of people and communities so equity informs meaningful narrative change.
  • Prioritizing governance of our data infrastructure to put equity at the center.
  • 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.

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