Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process
BackgroundPersonal 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...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2023-05-01
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| Series: | Journal of Medical Internet Research |
| Online Access: | https://www.jmir.org/2023/1/e41095 |
| _version_ | 1797734185949986816 |
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| author | Sally Okun Morgan Hanger Letitia Browne-James Tara Montgomery Gary Rafaloff Johannes JM van Delden |
| author_facet | Sally Okun Morgan Hanger Letitia Browne-James Tara Montgomery Gary Rafaloff Johannes JM van Delden |
| author_sort | Sally Okun |
| collection | DOAJ |
| description |
BackgroundPersonal 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.
ObjectiveA 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.
MethodsLeveraging 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.
ResultsCommitments 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.
ConclusionsThese 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. |
| first_indexed | 2024-03-12T12:40:40Z |
| format | Article |
| id | doaj.art-af35ecc7c0754dd9b48a8cf4deb40be3 |
| institution | Directory Open Access Journal |
| issn | 1438-8871 |
| language | English |
| last_indexed | 2024-03-12T12:40:40Z |
| publishDate | 2023-05-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | Journal of Medical Internet Research |
| spelling | doaj.art-af35ecc7c0754dd9b48a8cf4deb40be32023-08-28T23:52:37ZengJMIR PublicationsJournal of Medical Internet Research1438-88712023-05-0125e4109510.2196/41095Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation ProcessSally Okunhttps://orcid.org/0000-0002-4789-5599Morgan Hangerhttps://orcid.org/0000-0003-0577-2416Letitia Browne-Jameshttps://orcid.org/0000-0002-8682-024XTara Montgomeryhttps://orcid.org/0000-0001-8122-8901Gary Rafaloffhttps://orcid.org/0000-0002-2625-2025Johannes JM van Deldenhttps://orcid.org/0000-0002-5530-7275 BackgroundPersonal 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. ObjectiveA 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. MethodsLeveraging 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. ResultsCommitments 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. ConclusionsThese 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.https://www.jmir.org/2023/1/e41095 |
| spellingShingle | Sally Okun Morgan Hanger Letitia Browne-James Tara Montgomery Gary Rafaloff Johannes JM van Delden Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process Journal of Medical Internet Research |
| title | Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process |
| title_full | Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process |
| title_fullStr | Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process |
| title_full_unstemmed | Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process |
| title_short | Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process |
| title_sort | commitments for ethically responsible sourcing use and reuse of patient data in the digital age cocreation process |
| url | https://www.jmir.org/2023/1/e41095 |
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