Matthew Lee, dwellSense Lead Researcher, Ph.D. Student in Human-Computer Interaction, Carnegie Mellon University
In our evaluation of dwellSense, each study participant had a different primary care provider. We wanted to engage with each one of these physicians to identify how they would use the patient-generated data about medication taking, phone use, and coffee making. Unlike many of the other current Project HealthDesign teams that had one or two clinicians on their team who provided direct care for the participants, we had to reach out to the clinicians who were in our participants’ existing care networks.
The first step was convincing participants to allow us to speak to their health care providers (PCPs, specialists, nurses, therapists, etc.). Because they felt the data we were collecting about their observations of daily living were valuable for their doctors to have, it wasn't a stretch for them to give us permission. Our patients generally had very trusting and positive relationships with their health care providers. From this experience, we expect that a technological solution or service that shares data about ODLs or activities of daily living (ADLs) with clinicians would not normally be met with much opposition.
However, participants were a little tentative when we asked them to sign a release form authorizing their health care providers to speak to us, the research team members, about their medical conditions when we evaluated how care providers utilized the data about ODLs in their workflow. At this point, we reassured them that the point of the study wasn't to dig up all the details of their medical history from their care providers, but rather to give permission to the care providers to bring up any details that were relevant for evaluating the usefulness of patient-generated data in their workflow. All participants trusted us to keep matters confidential, as we were bound by university IRB confidentiality rules. Furthermore, all participants were open in sharing the details of their medical history and conditions with us as part of the study, so it was unlikely we would discover any secrets when speaking with their care providers.
Extrapolating from our experiences and applying it to how a third-party technology or service might share patient-generated data and collect medical details from the health care provider, we envision that these systems should limit the additional information they collect from health care providers, or at least allow the patient to control what information their health care providers can disclose to the system. Integrating patient-generated data about ODLs and ADLs directly into EHRs may work around this issue, but the patient-generated data, visualizations, and analytics may still reside with a third-party. Any information about how the patient-generated data are used or accessed by the care provider may reveal sensitive patient information. Thus, we are learning that the information flows among patients, care providers, and third-party services should be an important part of designing a useable system for sharing and using patient-generated data about ODLs and ADLs.