Data policies for big health data and personal health data

Abstract

Health information policies are constantly becoming a key feature in directing information usage in healthcare. After the passing of the Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009 and the Affordable Care Act (ACA) passed in 2010, in the United States, there has been an increase in health systems innovations. Coupling this health systems hype is the current buzz concept in Information Technology, „Big data‟. The prospects of big data are full of potential, even more so in the healthcare field where the accuracy of data is life critical. How big health data can be used to achieve improved health is now the goal of the current health informatics practitioner. Even more exciting is the amount of health data being generated by patients via personal handheld devices and other forms of technology that exclude the healthcare practitioner. This patient-generated data is also known as Personal Health Records, PHR. To achieve meaningful use of PHRs and healthcare data in general through big data, a couple of hurdles have to be overcome. First and foremost is the issue of privacy and confidentiality of the patients whose data is in concern. Secondly is the perceived trustworthiness of PHRs by healthcare practitioners. Other issues to take into context are data rights and ownership, data suppression, IP protection, data anonymisation and reidentification, information flow and regulations as well as consent biases. This study sought to understand the role of data policies in the process of data utilisation in the healthcare sector with added interest on PHRs utilisation as part of big health data.