Evidence clearly shows that the routine, secure sharing of relevant personal information among the many programs and systems that serve vulnerable children (education, healthcare, behavioral health, child welfare, social services, juvenile justice, etc.) greatly enhances care coordination, thereby systemically and meaningfully improving outcomes for this underserved population. But current processes for providing informed consent to share people’s sensitive data are slow, onerous and hard to manage, mainly because they’re siloed and paper-based.
The impact of that structural problem is profound. It starts with a corrosive lack of care coordination for millions of children, adults and families – and it results in a real-time undermining of individual lives and life prospects, as well as a perpetuation of multigenerational racial and socioeconomic inequities. Because the consequences are so significant, Stewards of Change Institute (SOCI) has decided to focus sharply in the months and years to come on a potentially game-changing technical solution to fundamentally remediate this disturbing reality.
In short, along with several partners, we’re developing a replicable, customizable, open-source, open-standards “Privacy Consent Service Utility” (PCSU) for use within and across domains, sectors, systems and programs nationwide. We’re starting with pilot/test sites in New Jersey and New York that focus on young people in the child welfare system – or at risk of involvement in the system – and our intent is to begin scaling this effort throughout the U.S. within a year or so.
There are other important consent-to-share initiatives at various stages of development, of course, nearly all centering on the sharing of healthcare-related information. We enthusiastically support those efforts and, indeed, are participating in some of them. What distinguishes SOCI’s own technical solution (called Project Unify) is that our goal is to automate consent so that it:
- Not only expedites the exchange of healthcare data, but does the same for relevant information held in domains usually classified as Social Determinants of Health and Well-Being (SDOH), which account for roughly 80 percent of health-related outcomes.
- Markedly improves care coordination across key SDOH systems and domains. Coordinating care across systems is currently tough to do because so much of the data needed is covered by federal regulations such as the Family Education Rights and Privacy Act; the Health Insurance Affordability and Accountability Act; and 42 CFR Part 2, which protects the confidentiality of substance use disorder patient records.
Project Unify is being specifically designed to enable and advance care coordination across SDOH because we strongly believe that’s the key to making substantive, enduring progress on interoperability, information sharing and, most pointedly, health equity. Indeed, we believe this technical solution could be transformational in numerous ways by dramatically reducing duplication, lowering costs, streamlining processes and improving outcomes.
This work, which is a strategic priority for SOCI, grew out of our National Action Agenda to Advance Upstream Social Determinants and Health Equity (NAA), a major initiative we launched a couple of years ago with the Stanford University Center for Population Health Sciences and additional organizational collaborators across the U.S. The initiative’s intent was (and still is) to instigate and implement tangible, systems-level change across Health, Human Services, Education, Public Health, Public Safety and other domains.
The Privacy Consent Service Utility is a primary way in which we’re striving to achieve that objective, and we’ve assembled a formidable team of volunteer technologists, subject-matter experts and other professionals to conduct the work. If you want to learn more about this ambitious, potentially transformational effort – or want to participate in it, individually or with your organization – please write me at email@example.com.
I’ll end this blog with a couple of important thank-yous: to the federally funded Integrated Care for Kids (InCK) sites in New Jersey and New York for their partnership as Project Unify’s initial implementation sites; and to the Robert Wood Johnson Foundation for providing funding to conduct an important national scan of existing consent-to-share efforts to inform our work. I’ll report periodically about our progress over the months to come, so (as they say) watch this space!