Here’s something we can all agree on: Sharing data across systems, sectors and domains is a highly desirable goal because it can result in enormous benefits, ranging from reducing costs to enhancing programmatic efficiencies to – most importantly – improving person-centered care and outcomes. What we also know, however, is that there are tall hurdles to achieving that goal, and two of the highest are 1) the need to readily secure consent from the people whose information is to be exchanged and 2) the need to maintain the privacy of that information.
It is because those challenges are so vexing, and so ubiquitous, that we decided to make “Managing Information Privacy and Consent” the second course of our InterOptimability Training Curriculum and Certification (ITCC) program. This course provides foundational knowledge designed to help any organization – public or private – better-understand, navigate and/or accelerate its interoperability efforts; more specifically, it offers your personnel the core competency they need to develop and manage projects that involve the sharing of private/sensitive data – notably including an understanding of when inter-agency data sharing is legally permissible or restricted, and how law and policy define the roles and responsibilities of the involved entities.
This unique approach provides an overview and roadmap for managing privacy and consent across health and human services domains (ex., education, child welfare, justice and behavioral health) and within the parameters of varying federal and state laws and regulations. And that means the general understanding of core privacy and consent concepts contained in the course can be used to navigate the increasingly complex world of interoperability, whole-person care, consent management, the social determinants of health and well-being, and other critical elements of effective information-sharing efforts.
To learn more or to register for the course, go to www.stewardsofchange.org/ITCC. You and/or your organizational colleagues can also sign up there for the first ITCC course, if you haven’t taken it yet; titled “Understanding and Implementing InterOptimability,” it provides the core knowledge and tools for furthering your own interoperability and information-sharing efforts. Our upcoming third ITCC course, on Confidentiality and Security, is a “partner” to the new one on Privacy and Consent – and we’re developing more courses for the months and years ahead.
ITCC is a first-of-its-kind program designed to further information-sharing and collaboration by providing organizations, teams and individuals with the knowledge, skills and tools to work more successfully within and across their increasingly complex and interconnected fields. ITCC achieves that goal through InterOptimability (think Interoperability + Optimization), a unique methodology that helps you further progress and sustainability by providing a common vocabulary, a shared body of knowledge, and effective methods and tools that support change.
ITCC utilizes an integrated, systems-level approach to prepare executives, program managers, supervisors and others in the public and private sectors to develop competencies needed to initiate, support and lead organizational change; facilitate data-exchange across silos; and leverage technical interoperability.
Driving Significant Progress on Consent is a Top Priority for SOCI
We strongly believe that modernizing processes for providing informed consent – which are currently highly siloed and paper-based – is critically important for a variety of reasons. Those include the ones mentioned above (enhancing efficiencies, lowering costs and improving outcomes), as well as empowering disadvantaged populations and remediating socioeconomic and racial disparities. As a consequence, in addition to our new ITCC course, SOCI is conducting a variety of projects that explicitly aim to drive significant progress on consent.
Our latest effort is to conduct a scan of national, state and organizational initiatives in the U.S. that also focus on improving consent processes. We’re obviously looking closely at the world of healthcare, because that’s where the most consent-related work is taking place; importantly, however, we’re also gathering information about technical advances, legal issues and best/promising practices in other “social determinants” domains that impact everyone’s health and well-being (education, child welfare, etc.).
The objective of this project, funded by the Robert Wood Johnson Foundation, is to better-understand what’s working, what’s not working, what best/promising practices are out there to build on, and where the holes are that need to be filled. We hope and believe that knowledge will accelerate progress broadly in many fields and at many levels; for instance, making consent more efficient and effective will enable better care coordination across the many services that millions of people in our country routinely receive, but which currently don’t “talk” effectively to each other for reasons including clunky, antiquated processes for obtaining people’s informed consent to securely share their personal information.
The scan will also inform a bigger, more-ambitious project that SOCI is conducting: Development, testing and deployment of a game-changing new approach we’re calling the Consent to Share Utility Service (C2SUS). Its aim is to create a standardized, open-source, open-API, open-standards process for providing and/or revoke permission for the exchange of personal/private data across numerous health, healthcare and social services domains.
To learn more about our work relating to Consent, go to www.nic-us.org. And, of course, to sign up for one of our two ITCC courses – including the new one on Privacy and Consent – go to www.stewardsofchange.org.