As people are living longer than before and chronic disease is on the rise, traditional health systems are being pushed to their limits. Enabling patients to become more self- aware and in control over their health is key for a better, more sustainable healthcare worldwide. In order to achieve that medical stakeholders must allow citizens to easily access their personal health information and equip them with tools to gain insight into and better manage their lifestyles.
However, disclosing patients’ health data comes with a number of constraints. On top of the legal and ethical issues – related to the privacy and security of citizens’ personal health data –, medical stakeholders must also have a say on what people should access in their medical records. Close attention should also be given to how that information is displayed, taking into account usability, patients’ needs and requests and proper data contextualization. Personal Health Records (PHR) solutions require patients’ to manually input and maintain their data, which ultimately leads to a lack of motivation on the patient’s side, in addition to potential data quality issues.
MyHealthData investigated possible scenarios for success- ful PHR applications, backed by medical information that is maintained by various stakeholders. The project focused on the requirements of such a platform from the perspectives of both patients’ and caregivers, how such a platform might impact the interaction between patients and care- givers, and the underlying legal framework.
“The Federal Government has made it a priority to develop concrete solutions to enable patients to access their own medical records in a comprehensive way,” states Marc Claesen, MyHealthData (imec - ESAT - STADIUS - KU Leuven). “During this project, we have conducted user research involving both patients and general practitioners (GP). We applied generative techniques, explored the potential of this near-future technology through design fiction, and validated our findings through extensive surveys. We have analysed potentially interesting information from GP and mutual health expenditure databases, in order to understand what type of information is available and how it could be disclosed to patients. We’ve taken into account both the patients’ needs and expectations, and the caregivers’ concerns. We have been able to draw very interesting conclusions and develop solutions with great potential for future applications.”