Empowering Patients Through New Tools and Resources
Whatever regulations and protections are established, individual patients will need to be informed and involved in the management of their own data to ensure that it is used in ways they approve of. This kind of patient engagement can be achieved via two paths:
- Use Technology to Improve Patient Consent for Data Sharing: Patients face confusing choices if they are interested in granting informed consent for the use of their personal health data. Technology platforms may provide new methods for creating “Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This app... More”, whereby patients electronically “control consent through time and receive information about the uses of their data.” This approach could provide a transparent, flexible, and user-friendly means to make more data available for use in a way that patients can trust. This model would take a similar approach to the All of Us Research program. The expansion of smartphones and other mobile devices enable greater user control over their records and the ability to quickly update their consent preferences. This could apply to End User License Agreements (EULAs) and Terms of Service agreements as well.
To facilitate data sharing while preserving patient control over data use, healthcare institutions should use technology to create a better, more dynamic system for informed consent and a spectrum of user preferences rather than a binary opt-in and opt-out. Institutions need to identify pilot projects for technology applications and disseminate campaigns for stakeholders and patients. These immediate actions serve as building blocks to generate better protections for patient data and increasing trust in research in the long term.
- Create Patient-Centered Outreach and Engagement Programs: Patients often feel confused and resentful in the current data landscape due to the emergence of new forms of health data, inconsistent rules and regulations, and a lack of awareness around how their health data may be used. HHS and its partners should undertake a comprehensive outreach strategy that would increase awareness of the right to access their data, the regulations designed to prevent harm from data misuse, and the resources patients have at their disposal to protect their health data. Moreover, HHS can help provide recommendations to industry to improve consumer literacy for EULAs and terms of service agreements.
By creating an outreach and engagement program to inform and empower patients about the uses of their data, healthcare institutions can empower patients and consumers with knowledge that helps them better access, use, and control their health data. Institutions can take immediate actions such as developing a campaign with videos, webinars, and visual materials to improve awareness of health data privacy issues, providing guidelines to industry that recommend language and terminology for consumer awareness, and provoking to HHS for convening a patient stakeholder group to advise on major health data issues, etc. Making these efforts helps to achieve the long-term goal of improving patient empowerment, sense of comfort and confidence navigating health data.