Data centric platforms and the governance of personal healthcare data in patient-centered care initiatives

Dragana is a PhD Research Fellow at the Department of Information Systems. She holds a Master's degree in E-business management from the “Ss. Cyril and Methodius” University in North Macedonia, where she worked on her master’s thesis investigating the challenges of governing the implementation of a national e-health platform.

She has four years of industry experience working for companies in the IT industry and UK healthcare sector. She is now embarked on a project researching data centric platforms and the governance of personal healthcare data in patient-centered care initiatives.

Project description

The large deployment of wearable devices, welfare technologies and smartphone apps, provided by diverse vendors, generate a large amount of unstandardized data into the heavyweight healthcare systems. While central clinical databases are saturated with raw patient information, we need novel approaches on how to segment such sensitive data within the legal framework and provide context for making more informed decisions based on prevention, instead of reactive treatment. 

The growing interest in patient-centered care depends largely on the availability of personal healthcare data, as well as the ability to protect it. With the increased distribution of patient-centric data, we are faced upon unprecedented tensions, like excessive supply of data irrelevant to the diagnosis, diverging views on distribution of duties, as well as questions related to data privacy, security and access control.

This project seeks to understand the gathering, sharing and utilization of personal healthcare data in patient-centered care where patients are empowered to make proactive and informed decisions about their health. Even though public attitudes towards data privacy are evolving, several related issues remain to be explored on how to make digital information in healthcare more secure and gain patients’ trust to sustain data sharing, collection and use for medical purposes.