The establishment of the Patient-Centered Outcomes Research Institute (PCORI) calls for patient-centeredness in research and decision making in medicine and health policy. One problem in practice is a lack of data on patient behaviors, preferences, and goals in receiving medical treatment.
Today much research relies on large data sets of administrative data, electronic medical records, registry data. As more data becomes available electronically, and more importantly, linked across more care providers and sources, more questions can be answered with greater rigor. Linking more types of individual-level information will provide researchers with more powerful tools to study the epidemiology of conditions and the effects of policies and medical technologies, which is really the core of what “big data” is about.
Nonetheless, few data sources outside of some clinical trials include information on patient reported outcomes or health behaviors. As for health behaviors, outside of certain surveys with limited sample sizes, measures are generally not captured nor are they reflected in a patient’s medical record.
In the March issue of Health Affairs, Glasgow and co-authors highlight the importance of including in electronic health records patient reported measures of psychosocial factors and health behaviors, such as medication adherence, smoking status, physical activity, and health-related quality of life. (1) This kind of innovation, while not without challenges, will make patient-centeredness in research and care decisions more powerful, targeted, and relevant. Aside from research, data on patient preferences should be used more in treatment decisions of individual patients. All too often, patient preferences get lost amid complex and fragmented care settings or failures in communication.
By Natalia Olchanski, MS
1. Glasgow et al. Patient-reported measures of psychosocial issues and health behavior should be added to electronic health records. Health Affairs 2012.