Background Personal information, including health-related data, may be used in ways we did not intend when it was originally shared. However, the organizations that collect these data do not always have the necessary social license to use and share it. Although some technology companies have published principles on the ethical use of artificial intelligence, the foundational issue of what is and is not acceptable to do with data, not just the analytical tools to manage it, has not been fully considered. Furthermore, it is unclear whether input from the public or patients has been included. In 2017, the leadership at a web-based patient research network began to envision a new kind of community compact that laid out what the company believed, how the company should behave, and what it promised both to the individuals who engaged with them and to the community at large. While having already earned a social license from patient members as a trusted data steward with strong privacy, transparency, and openness policies, the company sought to protect and strengthen that social license by creating a socially and ethically responsible data contract. Going beyond regulatory and legislative requirements, this contract considered the ethical use of multiomics and phenotypic data in addition to patient-reported and generated data. Objective A multistakeholder working group sought to develop easy-to-understand commitments that established expectations for data stewardship, governance, and accountability from those who seek to collect, use, and share personal data. The working group cocreated a framework that was radically patient-first in its thinking and collaborative in the process of its codevelopment; it reflected the values, ideas, opinions, and perspectives of the cocreators, inclusive of patients and the public. Methods Leveraging the conceptual frameworks of cocreation and participatory action research, a mixed methods approach was used that included a landscape analysis, listening sessions, and a 12-question survey. The methodological approaches used by the working group were guided by the combined principles of biomedical ethics and social license and shaped through a collaborative and reflective process with similarities to reflective equilibrium, a method well known in ethics. Results Commitments for the Digital Age are the output of this work. The six commitments in order of priority are (1) continuous and shared learning; (2) respect and empower individual choice; (3) informed and understood consent; (4) people-first governance; (5) open communication and accountable conduct; and (6) inclusivity, diversity, and equity. Conclusions These 6 commitments—and the development process itself—have broad applicability as models for (1) other organizations that rely on digitized data sources from individuals and (2) patients who seek to strengthen operational policies for the ethical and responsible collection, use, and reuse of that data.

BACKGROUND Personal information, including health related data, may be used in ways we did not intend when it was originally shared. However, the organizations that collect these data do not always have the necessary social license to use and share it. While some technology companies have published principles on the ethical use of artificial intelligence, the foundational issue of what is and isn’t acceptable to do with data, not just the analytical tools to manage it, has not been fully considered. Furthermore, it is unclear whether input from the public or patients has been included. In 2017, the leadership at an online patient research network began to envision a new kind of community compact that laid out what the company believed, how the company should behave, and what it promised both to the individuals that engaged with them and to the community at large. While having already earned a social license from patient members as a trusted data steward with strong Privacy, Transparency, and Openness policies, the company sought to protect and strengthen that social license by creating a socially and ethically responsible data contract. Going beyond regulatory and legislative requirements this contract considered the ethical use of multi-omics and phenotypic data in addition to patient-reported and generated data. OBJECTIVE A multi-stakeholder working group sought to develop easy-to-understand commitments that established expectations for data stewardship, governance, and accountability from those who seek to collect, use, and share personal data. The working group co-created a framework that was radically patient-first in its thinking and collaborative in the process of its co-development; it reflected the values, ideas, opinions, and perspectives of the co-creators, inclusive of patients and the public. METHODS Leveraging the conceptual frameworks of co-creation and participatory action research, a mixed methods approach was used that included a landscape analysis, listening sessions and a 12-question survey. The methodological approaches used by the working group were guided by the combined principles of biomedical ethics and social license and shaped through a collaborative and reflective process with similarities to reflective equilibrium, a method well known in ethics. RESULTS Commitments for the Digital Age are the output of this work. The six commitments in order of priority are: 1) continuous and shared learning; 2) respect and empower individual choice; 3) informed and understood consent; 4) people first governance; 5) open communication and accountable conduct; 6) inclusivity, diversity, and equity. CONCLUSIONS These six commitments—and the development process itself—have broad applicability as models for 1) other organizations who rely on digitized data sources from individuals and 2) patients and who seek to strengthen operational policies for the ethical and responsible collection, use, and reuse of that data. CLINICALTRIAL Not applicable