eHealth data refers to any data that has a heath related aspect and is stored and captured electronically. This can include more ‘traditional’ healthcare data such as disease registries and prescriptions information; genetic and genomic data; data collected through automated sensors and smart devices; self-generated data from patients and the public via social media and patient forums and public data sets such as commissioning data and aggregated population health data.
Electronic health data can be used by industry, academia and clinicians for a range of purposes including outcomes research, epidemiology, clinical research and safety monitoring (pharmacovigilance).
The UK has a unique ‘cradle to grave’ healthcare system with the General Practitioner being a gatekeeper to most of the health and social care requirements of an individual throughout their life. This offers the opportunity to collect several years of follow-up data for any individual within the healthcare setting.
The ABPI is supportive of strong governance and safeguarding procedures in order to protect patient confidentiality whenever engaging in work relating to eHealth data. The UK has a wealth of electronic databases developed over the past 20 years containing patient information with provisions in place to maintain patient confidentiality.
We are facing a rapidly evolving environment in ‘big data’ in the UK with ever increasing access to healthcare data, genetic and genomic data, self-generated data, data from digital engagement and large public data releases. The UK government and research charities have made significant commitments to developing the UK capabilities in health data, through the formation of the Farr Institute, HSCIC, CPRD and other ‘big data’ initiatives. The ABPI recently launched a ‘big data’ road map outlining a four-point plan to direct progress for the UK over the next four years to build the UK’s potential for world-class data-led research and innovation-driven healthcare delivery.
The four areas of focus in the plan are: increasing awareness; building capabilities and capacity; creating sustainable data ecosystems; and accelerating high-value opportunities.