Why Patients Need Big Data
Data from electronic health records (EHRs), electronic medical records (EMRs), patient reported outcomes (PROs), and physicians’ notes can inform and improve patient care. But without training in methods and applications, patients and advocates may not feel comfortable or prepared for participating in big data design and evaluation. This is not only a setback for patient engagement, it is also a detriment to research. BD4P training helps patients understand what big data is, how it is used in research and medicine, its promises and limitations, its challenges and its potential impacts.
Big data can benefit patients across the spectrum of healthcare. It can be used to identify the most efficient and cost-effective treatments, recognize disease trends, forecast and prevent adverse events, and offer new treatments andproducts. In direct patient care, it can increase the coordination of care between providers by utilizing EHRs and other innovations. Big data can also lead to more comprehensive research, with findings informing a broad group of stakeholders.
Patient populations who may benefit from the use of big data in health include:
- Rare disease population – a gathering of rare disease data from around the world can create large compilations of information in areas where there is little available data
- People with chronic conditions – a large collection of multi-year data from disparate sources allows for the review of longitudinal effects and results
- People with Parkinson’s/neurological disorders – wearables and similar methods of patient-provided input allows for continuous tracking of symptoms, effects, and other pertinent data
- Healthy patients – may help to identify predispositions to certain diseases or conditions; could provide information on susceptibilities to illness by identifying specific risks and habits