Dr. Kathy Sward spoke at the CU College of Nursing on January 31st about monitoring devices and how informatics will continue to shape the future of health care. As more people have their own personal sensor devices, health systems are beginning to recognize the need for access to users' data. Dr. Sward noted that most people are highly interested in seeing their own health data (at least for an initial period after receiving the sensor devices), and that they sometimes change their behavior in response to data. She gave an example from an asthma study, in which a personal air quality sensor revealed more airborne particles after vacuuming, which the study participant tended to do just before her children with asthma came home from school. After seeing the data she started vacuuming earlier in the day, and her children's asthma symptoms were reduced as a result.
Personal monitoring devices now include a large array of sensor types, including temperature sensors like those in people's smart-home thermostats, movement sensors that track when someone is in a given space, air quality sensors, light sensors, noise sensors, heart rate sensors, and activity sensors. A few specialized sensors measure breathing, galvanic skin response, electrocardiogram patterns, or even EEG brainwave readings; all of these can be used at home and are available as consumer electronics (no prescription needed). The most common sensor type by far is movement -- Dr. Sward noted that "everybody and their dog has actigraphy, and that really does include some dogs!" There is an accelerating trend toward "ubiquitous monitoring" that is likely to continue as time goes on.
Besides personal health sensors (e.g., for fitness apps and health promotion), the total universe of monitoring devices also includes handheld medical monitoring devices (e.g., for self-monitoring of blood pressure in heart disease or glucose in diabetes). Fitness trackers are often seen as consumer electronics, while personal electronics to monitor signs and symptoms of chronic conditions are seen as medical devices and regulated by the FDA. However, the line between the two categories of devices is blurring in studies like the recent line of research showing that Apple Watch heart rate data can be used to successfully detect heart arrhythmia, sleep apnea, hypertension, and even diabetes. Dr. Sward's perspective is that "it's still the wild, wild West" in terms of device manufacturers, sensor types and accuracy, algorithms to analyze data, and formats for data storage and transfer.
Sensors can be understood as "digital biomarkers," said Dr. Sward, and therefore have the potential to offer clinicians a great deal of new information about patients' health and behavior in the context of their everyday lives. Despite the potential advantages, currently it is difficult to transfer even the data from formally recognized medical devices like glucometers into a patient's electronic health record. This is because most electronic records are provided by a few large database vendors as relatively closed systems; efforts such as FHIR to standardize electronic health data for easier transfer between systems are still in their infancy. Furthermore, some providers are not interested in receiving data from monitoring devices, citing concerns about the accuracy of consumer-grade devices or liability concerns about what they would do with the data if they had it. Dr. Sward noted that clinicians "are already overwhelmed, and we're turning on the fire hose of data" with personal trackers. Dr. Sward's work focuses on developing infrastructure to (a) transfer data successfully between systems, and (b) provide it to health care providers in a clinically useful format. She noted that more data is not the same as more useful information, and that in fact "more random or pointless data is noise." Clinicians already feel overwhelmed with pop-up alert messages in their electronic health record systems, and are likely to resist any data that is not immediately helpful to them.
So far, the early adopters of personal sensor data are health researchers. Dr. Sward's research group at the University of Utah is looking at issues of data quality and accessibility, as well as how to format data in ways that have a positive impact on care. In our own research, we are using sensors to track sleep, activity, and heart rate, as well as medication adherence based on pill bottle openings. Also at the CU College of Nursing, Dr. Blaine Reeder is leading a study of smart home sensors to evaluate physical functioning in older adults. And at the national level, the U.S. National Institutes of Health recently announced their intent to include FitBit activity data in the "All of Us" research program where people voluntarily contribute their health data to a nationwide dataset. Again, Dr. Sward said that people are excited to be part of these studies, which are variously described as "citizen science" or the "quantified self." A few caveats apply because research participants who can see their own data also sometimes make changes from the research protocol just because they are interested -- e.g., moving a sensor around to different locations in the house or altering their own behavior to get different readings. But Dr. Sward said that in her experience this experimenting phase is self-limiting, with people losing interest after about 3 weeks (a duration that is slightly shorter than our own experience with pill bottle monitors, although we also found an eventual return to baseline). And people in Dr. Sward's study have been so engaged that they were also willing to complete daily electronic surveys for 18 months -- significantly longer than our own experience with daily surveys.
Health sensors are important in the context of Two Minds Theory because it is collected in the context of everyday life, and is not dependent on participants' interpretations of their experience in language. Sensors therefore can provide an important window into the workings of the Intuitive System. On our measurement page, we summarize the experiences of CU College of Nursing researchers with a few of the many health sensor devices available. We plan to update and expand our listing as the Two Minds Theory research agenda progresses.
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