AboutMe is a BRC initiative that aims to extend the benefits of data and genomic insights to all NHS patients by embedding research into routine clinical care. Better use of routine data to improve quality and safety of care is already known, however, if this can be further supplemented by embedding –omics (e.g. genomics, proteomics, metabolomics) this will enable further unparalleled opportunities of understanding cause, consequences of disease and discovering interventions at key points in the clinical course to improve patient outcomes. This will go beyond previous efforts which have been focused on a particular disease and seek to ‘give back’ results of immediate value to patients as well as lead to data-driven (omic) drug-target identification/validation as well as tailoring treatments.
This Initiative brings together UCL/UCLH expertise in Information Governance and Consent, Biobanking and Arrays, Clinical Informatics, Imaging and Clinical Phenotyping, and Patient and Public Engagement/Involvement. Working with these areas of expertise, AboutMe investigators have already begun to work on these pipelines in conjunction with Clinical Research Informatics Unit (CRIU) at UCLH with existing consented data on stroke, and this is being followed up with an outpatient-based project in blood pressure, with a plan to expand more broadly to other disease areas. The aim is to demonstrate that we can make NHS pipelines robust and access data for research, but also how these data, e.g. genomics are best used and returned to patients.
In order to achieve this, a re-engineering of the workflows is needed, specifically creating the pipelines such that data can be accessed with ease, within governance frameworks, and research becomes an easy by-product. This shifts the paradigm of both routine clinical care workflows and aligns it with research, but for a consensual aim of patient benefit and public health.
