Privacy, consent, and identity are deeply intertwined. For consent management to effectively protect patient privacy while supporting the alignment of services, the execution of a digital identities strategy is paramount. Consent must be tied to individuals and move with their data when shared to successfully respect and adhere to a patient’s privacy and information sharing preferences.
On December 11, 2023, Connecting for Better Health partnered with Stewards of Change Institute and the California Health Care Foundation to host the third webinar in a four-part series titled Advancing Consent Management in California. This webinar focused on funding and technology strategies to effectively incorporate consent into identity management policy and practice, a critical issue for California’s statewide Data Exchange Framework that seeks to increase the flow of real-time health and social service information.
Highlights from the event include the following insights:
- Dr. Manisha Sharma, senior medical director of Blue Shield of California Promise Health Plan, raised awareness of historical disparities and the need to address them in consent processes. Numerous communities, particularly Black and Brown communities, have mistrust of health data collection due to historic instances of misuse and disregard of their consent. Consent management requires a thoughtful and culturally-informed approach that considers the potential impact on individuals and communities, such as with the adoption of a unique identifier for patients that would especially support health care access for undocumented individuals. She also stated that governance must be mindful of the “why” and who we are doing this work for.
- Kate Ricker, principal consultant at Amelia Mayme Consulting, discussed the challenge of existing funding silos and their impact on scaling consent-related activities, especially in the public sector. She highlighted Washington state as a positive example of effective funding and strategic coordination across different agencies, aligning efforts and sharing resources. Funding strategies should be creative, such as by combining grants, federal and state funds, taxes, and state legislation to develop comprehensive systems for consent, identity management, and related technical systems.
- Jim St. Clair, chief executive officer of MyLingo, emphasized the importance of patient identity in consent processes to ensure accuracy and consideration of an individual’s perspective. With technical solutions that can privately confirm identity to affirm information and permissions, we can move away from the common practice of repeated disclosures of personal information and consent preferences that impact trust and make it difficult for individuals to track who has access to their information. He acknowledged that when individuals actively control and monitor their information sharing, there is also a need for culturally-appropriate training to empower informed consent decisions.
View the webinar recording here.