Stewards of Change Institute (SOCI), in partnership with the Healthcare Information Management and Systems Society (HIMSS) Government Affairs and with funding from the State Health & Values Strategies Program, is excited about convening the first national policy-focused workshop to improve the management of informed consent to share information across the spectrum of care.  This invitation-only event will occur during the HIMSS pre-conference from 10 a.m. to 2:30 p.m. on Monday, April 17.

The process of obtaining and managing informed consent to share information today is highly siloed, often manual and frequently paper-based. It is an inefficient, frustrating and burdensome process that negatively impacts health equity, outcomes and operations (among other things). Altering current processes so that consent is addressed up-front will contribute to significant progress, most pointedly by helping organizations to meaningfully enhance equity by enabling patients/clients to make more-informed decisions about whether, when and with whom to share their personal information – and/or revoke permission.

Consent is required not only for protected health information in medical care, but also for sharing personal information among social services, education, behavioral health, justice and other programs/domains. Obtaining informed consent is an essential first step to enable data sharing and interoperability, which are critical for achieving whole-person care and the triple-aim. Unfortunately, most providers focus solely on their own domains and discrete programmatic functions, rather than the interrelationship among the whole provider ecosystem.

Over the past two years, SOCI and its partners have convened hundreds of subject matter experts across disciplines from government, industry, academia and other sectors. These convenings have facilitated learning, incubated technical workgroups and begun to design pilot projects to demonstrate concrete ways to improve and standardize practices for obtaining, storing, accessing and using electronic consent documents, so they can be replicated across the nation to facilitate appropriate, efficient, and ethical information sharing. SOCI has also conducted a national scan and disseminated the findings in “Modernizing Consent to Advance Health and Equity,” which serves as the basis for our educational and advocacy work and is informing the design of demonstration projects being planned with New York, Minnesota and Colorado.  

The primary goal of the workshop with HIMSS is to elevate the key policy considerations enabling and/or inhibiting Consent Management to drive national awareness, engagement and action in 2023 and beyond. The event will include an expert panel discussion, a keynote presentation and facilitated breakout discussions to share current and emerging knowledge, identify tangible resources (technical, legal, funding, governance, other), inform an ongoing learning agenda, and disseminate knowledge. Participants will include representatives from all levels of government, industry, associations, nonprofits, academia, foundations, and people with lived expertise. We will continue focusing on consent with technical demonstrations/discussions in the Interoperability Showcase.

One key outcome from the workshop will be to sustain focus and engagement on consent by forming a HIMSS-sponsored workgroup/committee to delve deeply into the various policy considerations and opportunities; publish and disseminate learning; highlight demonstration projects; and sustain a thoughtful focus on consent at this critical juncture in the evolution of the health- and social-care ecosystem.