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):
- Formation, management and ongoing growth of SOCI’s National Interoperability Collaborative, an innovative and highly active community of networks
- Creation and implementation of our National Action Agenda to Advance Upstream Social Determinants and Health Equity, which included a groundbreaking symposium in January 2021
- Establishment of Project Unify, a multi-sector effort – with weekly calls that you can join! – to accelerate the secure use of information sharing and interoperability across multiple domains
- Development of our Consent Service Utility, an open-source, open-API solution for providing, managing and revoking permission to share personal data across domains
- Publication and dissemination of a first-of-its kind report, “Modernizing Consent to Advance Health and Equity: A National Survey of Key Technologies, Legal Issues and Promising Practices.”
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.