RAND Health Quarterly 2018 v7(2) 3
- This report aims to: identify and explain the potential and existing benefits that can stem from effective use of health data; and examine the key drivers of supportive health data ecosystems and their implications for future research, policy or practice, in light of the diverse challenges to be addressed.
- In this context health data includes
- (i) electronic health records (EHR) data on patient symptoms, referrals, prescriptions and treatment outcomes;
- (ii) longer-term treatment outcomes data from real-world effectiveness studies;
- (iii) medicine performance data from RCTs ;
- (iv) genomic and proteomic data on individuals and associated biomarker data;
- (v) data from wearables and sensors (e.g. on vital signs); and
- (vi) data on individual preferences and health-seeking behaviours from social media.
Abstract
The potential of health data to improve the efficiency and effectiveness of health research and development, healthcare delivery, and health systems more widely is substantial. There are many initiatives across the EU that are experimenting with ways to capture value and address the nexus of technical, legal, ethics-related, governance and data protection-related, and cultural challenges to delivering potential benefits for society and the economy. The field of health data research and policy is highly dynamic and there is a need for further reflection, thematic learning and evaluation to better understand how to create and connect receptive places, to inform future interventions and to identify transferable lessons. Our research emphasises that realising the benefits of health data at scale will require: a simultaneous focus on the technological and structural conditions that are required; collaboration and coordination to transform working cultures and build health and care workforce and citizen capacity to engage with data; and efforts to ensure that policy, industry, and research communities respond to public concerns, needs, and expectations in a timely and sustained manner. The global community of individuals and organisations with a stake in health data will also need to consider how progress can benefit different populations across the world in an equitable manner.
The potential of health data to improve the efficiency and effectiveness of health research and development, healthcare delivery, and health systems more widely is substantial. There are many initiatives across the EU that are experimenting with ways to capture value and address the nexus of technical, legal, ethics-related, governance and data protection-related, and cultural challenges to delivering potential benefits for society and the economy. The field of health data research and policy is highly dynamic and there is a need for further reflection, thematic learning and evaluation to better understand how to create and connect receptive places, to inform future interventions and to identify transferable lessons. Our research emphasises that realising the benefits of health data at scale will require: a simultaneous focus on the technological and structural conditions that are required; collaboration and coordination to transform working cultures and build health and care workforce and citizen capacity to engage with data; and efforts to ensure that policy, industry, and research communities respond to public concerns, needs, and expectations in a timely and sustained manner. The global community of individuals and organisations with a stake in health data will also need to consider how progress can benefit different populations across the world in an equitable manner.
