ONC Event to Focus on a Key SOCI Priority: The Vital Role of Consent for Sharing Data

Stewards of Change Institute (SOCI) is grateful for the opportunity to help plan and participate in an important event – titled “Discovery Workshop on eConsent: From Birth to End of Life” – being organized by the federal Office of the National Coordinator for Health IT (ONC). We urge anyone interested in this blazing-hot topic to register to attend the webinar, which will take place from 12-4:30 p.m. on August 16.

As readers of this newsletter well know, SOCI has played a leading role for years on raising awareness about the pivotal role of informed consent, as well as on developing approaches to bring consent processes into the 21st Century. Just to name a few, our activities on modernizing consent have included (with the active participation of hundreds of subject-matter experts, officials from government at all levels, academics and researchers, senior industry representatives and others):

The reason we’ve put so much effort and so many resources into this work is simple: Informed consent is immensely important, but the processes for obtaining, revoking and managing it are still highly siloed and/or paper-based. So modernizing these processes promises to have pervasive, positive consequences, from improving care coordination, operational efficiencies and outcomes, to helping to ameliorate socioeconomic and racial disparities. Most pointedly, modernizing consent will drive greater health equity by empowering everyone to decide when, how and with whom their private data can be shared.

All of which explains why we’ve supported the ONC in planning its upcoming half-day workshop, and why several of us – including SOCI President Daniel Stein, along with colleagues Dr. Christine McCoy, Jim St. Clair, and Brian Handspicker – are delighted to be presenters at the event. Here’s a link to the registration again. We sincerely hope you’ll consent to join us.

Action Plan for Advancing Health Equity

In addition to advancing its own initiatives, SOCI is also proud to regularly collaborate with other organizations that are working to make progress in using interoperability and information sharing to improve people’s lives. A recent example is our participation in an important discussion on how to help achieve health equity by collecting, analyzing and sharing data relating to race, ethnicity and language (REaL), as well as sexual orientation and gender identity (SOGI).

The output from our conversations, which were hosted by Blue Shield of California, is a new report titled “Activating Health Data to Achieve Health Equity: Recommended Strategies for REaL and SOGI Data.” The  authors explain that this effort is necessary because “we suffer from a lack of transparency as well as inconsistent or missing data, which compound historical injustices in our health systems.”

The idea behind the initiative is that, in order to effectively address disparities, they have to be measured. That’s why SOCI is partnering with other thought, policy and practice leaders in this work to advance efforts by healthcare, government, research institutions and business partners to achieve health equity by collecting, analyzing and sharing all the relevant data.


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.