Dorothy Miller, J.D., M.P.H., Health Policy Project Assistant, Project HealthDesign National Program Office
This post is second in a series contemplating governance of patient-generated data in a clinical setting.
How can we encourage providers to integrate patient-generated data into their clinical decision-making? Providers need to feel confident that the patient-generated data they are accessing is trustable and authentic. Providers often have limited time to meet with patients and could see patient-generated data as an additional task to be completed, instead of a way in which patients can effectively communicate a richer picture of their day-to-day health.
Providers can think about patient-generated data fitting in with a traditional model of clinical decision-making in two ways. First, the data can be considered another means of understanding a patient’s description of their health. The model below (see Figure 1) shows the patient-generated data entering the clinical workflow as a type of information presented to the provider by the patient as they describe their condition.
A provider might traditionally ask a patient to describe their health status and expect an answer that describes the patient’s experience. With patient-generated data, the patient uses an alternate method to explain her health status and related experiences. A second way that patient-generated data can be integrated into clinical decision-making is for the provider to access patient-generated data as an external source of knowledge. The model (Figure 1) also shows the patient-generated data in that capacity, informing the provider as an external resource. Along with test results, medical history, and other types of information a provider consults, the provider may also access patient-generated data to provide additional information.
Figure 1 demonstrates how patient-generated data can be integrated into the clinical setting. By understanding patient-generated data’s integration into clinical decision-making, we can create governance tools that integrate the principles emphasized in the previous blog post: data accuracy, integrity, and appropriate use. So what types of governance tools would encourage providers to take these steps in integrating patient-generated data at both levels? Providers should be encouraged to integrate patient-generated data into clinical workflows. Today, many patients interact with providers without the opportunity to discuss their patient-generated data. One solution to this challenge is clinical workflows that give patients opportunities to share their data. If the provider is worried about being overwhelmed with data that is voluminous or difficult to interpret, a clinic could provide standardized summaries accessible to providers, without compromising patients’ abilities to collect and generate data as they desire.
Regarding laws and policies that govern patient-generated data, we need to thoughtfully and carefully balance provider concerns with the advantages patient-generated data can give patients and providers. Laws and regulations should be designed that give providers confidence in patient-generated data, both in terms of data accuracy and data integrity. When providers feel confident that the patient-generated data they receive is trustable, accurate, and reflects the patient’s day-to-day experiences, they may feel more confident in acting on that data. Clear guidelines allow patients to be comfortable with sharing their own data and may decrease providers’ concerns about liability stemming from using patient-generated data.
If you’re wondering how provider liability fits into this picture, stay tuned. Our legal and policy advisory group at Manatt, Phelps & Phillips, LLC, and the Center for Democracy & Technology is working on a paper on this exact topic, and we will share more information about it soon.
Citation for Figure 1: Robert B. Elson et. al. The Practice of Informatics: Viewpoint: An Industrial Process View of Information Delivery to Support Clinical Decision Making: Implications for Systems Design and Process Measures J Am Med Inform Assoc 1997; 4:4 266-278 doi:10.1136/ jamia.1997.0040266.