Patients are generating massive amounts of specific and attributable health information through their use of the internet, social networks, and mobile phone applications. How is this data being generated, consumed, and archived? What are the opportunities to use this data to increase healthcare efficiencies and to improve patient outcomes?
Indiana University Center for Law, Ethics, and Applied Research (CLEAR) focus is to enhance the ethical, lawful, and practical use of health information to facilitate treatment and research, improve health outcomes for patient, and facilitate accountability. One of CLEAR’s ongoing projects is the development of a holistic view and map of the digital health information that is generated on a daily basis within computerized healthcare systems, the internet and social media platforms, and through consumer purchases of health related products and services. This map, once completed, will be available in the public domain and will be used to educate patients, caregivers, healthcare providers, and legislators about the volume of digital health data that is produced and consumed by patients that is referenced and archived by private entities. The map will be used to stimulate relevant privacy discussions and encourage appropriate integration of these silos of data to generate patient-centric insights that will improve healthcare efficiencies and patient outcomes.