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For most people health occurs in every-day living, not in hospitals and doctor's offices. They They must remember to take medications, monitor healing progress, note changes from normal, or get up and exercise — all information intensive and cognitively demanding activities. Through Through Project HealthDesign, an eight-year initiative funded by the Robert Wood Johnson Foundation, we learned that there is so much more to health information than what is generated in the course of care and recorded in the electronic health record. In In addition to lab values and blood pressures, people attend to a wide range of data that informs them about their health status and drives them toward healthy behaviors. We We call these novel data types "observations of daily living" (ODLs). ODLs ODLs represent the sensations, behaviors, attitudes, thoughts, and exposures to which people attend and draw interpretations about their health situation. Patient-generated data includes ODLs, as well as a full range of parameters that only the individual person can provide. Programs like PCORI and the NQF Patient-reported outcomes measures project show that patient-generated data not only is useful for augmenting clinical signs and assessments in evaluating a patient's health needs, but also can be used to determine the effectiveness of care. There is growing acceptance of the importance and relevance of patient-reported data and an uptake in the sophistication of the tools used to create, store, report, and analyze it. In In this presentation, Dr. Brennan will introduce the concept of patient-generated data, provide an elaboration of one novel type (ODLs), and explore the ethical and policy issues related to capture and use of patient-reported data. |
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Patricia Flatley Brennan, R.N., Ph.D., is the Lillian L. Moehlman Bascom Professor, School of Nursing and College of Engineering, University of Wisconsin, Madison, Wisconsin. Dr. Brennan received a Master of Science in Nursing from the University of Pennsylvania and a Ph.D. in Industrial Engineering from the University of Wisconsin-, Madison. Following seven years of clinical practice in critical care nursing and psychiatric nursing, Dr. Brennan held several academic positions. Dr Dr. Brennan is National Program Director of Project HealthDesign, a Robert Wood Johnson Foundation-funded initiative designed to stimulate the next generation of personal health records.
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