Spreading the Word: Consent’s Key Role in Advancing Information Sharing, Health Outcomes and Equity

by Daniel Stein

Researching and disseminating reports, studies, playbooks and white papers is one of the principal ways Stewards of Change Institute (SOCI) has provided information, insights and thought leadership since the organization’s inception over a decade ago. Here’s a sampling of our publications over time.

We know, however, that affecting meaningful change takes more than just putting knowledge out into the world and hoping for the best. So we believe the next steps – dissemination, education, discussion, collaboration and advocacy – are pivotal to driving genuine understanding and then real progress.

Which brings me to the point of this blog. We recently published one of our most-potentially-consequential reports to date, Modernizing Consent to Advance Health and Equity: A National Survey of Key Technologies, Legal Issues and Promising Practices, which examines why informed consent is so pivotal and makes recommendations for making demonstrable progress in numerous regards.

Now we’re “taking the show on the road,” with three upcoming conference presentations at which SOCI and some of its partners/collaborators will highlight the most-important facets of our report and of consent more broadly. A particular focus will be on SOCI’s Consent Service Utility (CSU), an open-source, open-standards technical solution and architecture that we are developing – again, with collaborators – to modernize the consent process and enable its use across healthcare, behavioral health and human services (ex., housing, education, child welfare and other social determinants of health and well-being).

Please sign up to join me for one or more of these upcoming events:

April 5 – Academy Health’s 2022 Health Datapalooza and National Health Policy Conference, which will take place in Arlington, VA, and online. I’ll be presenting Taking Steps Toward More Seamless Data Exchange and Health Equity By Modernizing Consent at 2:45 p.m. My co-presenters will be Pooja Babbrah, a Practice Lead at Point-of-Care Partners; and Mary Kratz, Executive Vice President of the Interoperability Institute.

April 7 – All In Data for Community Health webinar, which will take place online in partnership with the Network for Public Health Law. I’ll be presenting Modernizing Consent: Creating a Replicable Model to Advance Health and Equity at 2-3 p.m., with an opportunity for extended dialogue until 2:30 p.m. My co-presenters will be Chris Alibrandi a Senior Attorney at the Network for Public Health Law; Kathryn Miller, Chief Operating Officer of the Bronx Regional Health Information Organization; and Shauna Barry, a Program Director at Bronxworks.

May 1-4 – National Council for Prescription Drug Programs 2022 Annual Technology and Business Conference in Scottsdale, AZ. I’ll be presenting Accelerating Progress through Modernized Consent. Stay tuned for a specific date and time for my presentation.

One final point about our Modernizing Consent report: We designed it to be a “living document” that will be updated regularly over time to make it as current and useful as possible. If you haven’t read it yet, please download it and take a look. And, importantly, we invite you to provide us with additional content based on your own projects by sending an email to info@stewardsofchange.org.

Daniel Stein

Daniel Stein is President of the Stewards of Change Institute (SOCI), a unique not-for-profit think tank and advocacy/implementation organization. He is also Co-Principal Investigator for the National Interoperability Collaborative (NIC), a new “Community of Networks” initiative led by SOCI and AcademyHealth. SOCI is built on the foundational belief that responsible, systemic information-sharing is the key to achieving enduring advancements in the health and wellness of children, adults and communities. SOCI’s mission is to improve lives by initiating, inspiring and implementing transformational change in Health and Human Services at all levels of government, industry and the nonprofit sector. For over a decade, Stein has been a thought-leader, educator and advocate in promoting and implementing “interoperability” by working nationally in the private and public sectors – at the local, state and federal levels – to instigate systemic change. Through the Stewards of Change Consultancy, which is the implementation arm of SOCI, Stein also has provided his expertise and experience nationally to create the strategies, operational regimes, tools, trainings and materials needed to achieve tangible results and fulfill the Institute’s mission.