Dorothy Miller, J.D., M.P.H., Health Policy Project Assistant, Project HealthDesign National Program Office
This post is first in a series contemplating governance of patient-generated data in a clinical setting.
How does patient-generated data fit into the clinical setting? How do we encourage patients to engage in their own health care by enabling them to bring their own data into the clinical setting? And how can we reassure providers that their patients’ data can be treated as trustable and authentic sources of information for clinical decision-making? Understanding how to integrate patient-generated data into clinical decision-making focuses on three key principles:
- Integrity: Patient-generated data is trustable and authentic for both patients and providers.
- Accuracy: Providers are confident that the patient-generated data reflects the patient’s inputs.
- Appropriate use: Patients are confident that the data they generate is being used as intended.
Project HealthDesign’s five current teams have equipped more than 135 patients with chronic diseases to track, review and share their “observations of daily living,” or ODLs. These ODLs are patient-generated, patient-defined and patient-sourced, and can range from information about an individual’s pain or energy levels to truly unique observations about his or her moods. Each team has taken a different approach to the systems and technologies used to capture ODL data and share the resulting data and/or summaries with the patient’s clinicians. These new approaches also present new challenges as we think about how patient-generated data fits into the clinical experience. As a result of our work with ODLs, we’ve started to think critically about ODLs and other innovative types of patient-generated data.
We want patients to have the ability to bring the patient-generated data they value into a clinical setting. At the same time, we believe that governance tools for patient-generated data must be carefully and thoughtfully crafted. Keeping in mind the three principles of integrity, accuracy, and appropriate use, we believe that policies and governance tools that recognize the unique nature of patient-generated data can be crafted. Stay tuned for the next post in this series, which deals with how patient-generated fits into the clinical workflow.