Patient-generated health data, collected through web-based platforms, wearable devices, and other means, is of interest to many different healthcare stakeholders. This data may be used for research, can help inform the development of consumer-facing decision-support tools, and is of great interest to patients who wish to play an active role in their own health and health care. However, many challenges can make it difficult for patients to access their own clinical data, and for researchers, clinicians, and tool developers to fully harness and use patient-generated data to address the questions that patients care about most. In this context, there is a need for a unifying framework to guide the identification of evidence gaps related to patient-generated data, set priorities for future studies, and provide insights into consumer technology preferences that can be used to inform the development of future consumer-facing tools.
This project will address these challenges by convening a diverse group of stakeholders including consumers, patients, caregivers, researchers, data scientists, tool developers, and usability experts to develop a consensus-based research agenda that will be widely disseminated to stakeholder groups through an online journal and strategic use of social media. The objectives are to:
- Foster greater communication and understanding among patients, researchers, developers, and others regarding patients’ preferences for involvement in data generation, analysis, curation, use, and dissemination
- Help researchers, data scientists, and developers better understand patients’ perspectives on the collection and use of patient-generated data to inform research and development of consumer-facing tools
- Incorporate and disseminate insights from these discussions into a consensus-based research agenda to inform future work on the topic of patient-generated data and its use for research, clinical care, and tool development
Over the long term, the project seeks to help accelerate the development and adoption of evidence-based usability studies (about consumer decision-support tools, collection platforms, privacy and security policies and practices, and presentation options) that robustly reflect the priorities, preferences, and values of patients and consumers.
Project activities will include convening an advisory committee; conducting an environmental scan of relevant literature; holding two patient and stakeholder workshops, one in California and one in Washington, DC; and commissioning and publishing three papers. Outputs will include a journal issue comprised of several papers outlining a consumer-driven research agenda on patient-generated data, and a public-facing webinar that will accompany the issue’s release.
Patients and stakeholders will be an integral part of all project activities, serving on the advisory committee, leading and participating in the workshops, helping author the papers, and advising on the dissemination of findings. Key collaborators will include the Health Care Systems Research Network, which will assist in identifying patients and other stakeholders to involve in the project, and Katherine Kim, PhD, MPH, MBA, of the University of California, Davis, who will serve as a project advisor and secure meeting space for one of the workshops at her institution.