Glossary and Technical Terms

A&E - Accident and Emergency ​ AHSN - Academic Health Science Network ​ AMR - Anti-Microbial Resistance ​ ARC - Applied Research Collaboration ARLD - Alcohol-related Liver Disease ​ ASD - Autism Spectrum Disorder ​ BiB - Born in Bradford CCG- Clinical Commissioning Group ​ CCIO - Chief Clinical Information Officer ​ CHC - Connected Health Cities ​ CIO - Chief Information Officer ​ CLAHRC - Collaboration for Leadership in Applied Health Research and Care ​ COPD - Chronic Obstructive Pulmonary Disease

CPM - Clinical Prediction Models ​ CPRD - Clinical Practice Research Datalink ​ CY - Connected Yorkshire

DAC - Data Access Consortium ​ DHSC - Department of Health and Social Care ​ eFI - Electronic Frailty Index ​ EPaCCS - Electronic Palliative Care Co-ordinating Systems ​ GDPR - General Data Protection Regulation ​ GM - Greater Manchester ​ GNCR - Great North Care Record ​ HIE - Health Information Exchange ​ ICH - Intracerebral Haemorrhage IG - Information Governance IT - Information Technology

LHS - Learning Health System MIG - Medical Interoperability Gateway NENC - North East and North Cumbria NHS - National Health Service NHSA - Northern Health Science Alliance NWC - North West Coast PCCC - Pre-Competitive Collaborative Consortium PPI - Patient and Public Involvement QI - Quality Improvement R&D - Research and Development SILVER - Smart Interventions for Local Vulnerable Residents SPCS - Shared Palliative Care Summary TRE - Trustworthy Research Environment

Technical Term Definitions

Algorithm: An algorithm is a sequence of instructions for a computer to follow to undertake a calculation or solve a problem. ​ Anonymisation: The process of rendering data into a form which does not identify individuals either directly or indirectly and where identification is not likely to take place by any means reasonably likely. ​ Care pathway: A document agreed by all disciplines involved in the care of a specific group of patients (such as patients who have suffered a stroke), which outlines the agreed standards for treatment, based on the best available evidence. It makes clear what different tasks (interventions) need to be done by which professionals, when and where. ​ Citizens’ Jury: A Citizens’ Jury is a method of deliberation where a small group of representative people come together to deliberate on an issue over a set period of time. ​ Data-action latency: The time between data becoming available and it being used in an actionable way. ​ Data Ark: A structured system for key stakeholders to collaborate: bringing together involved citizens, problem owners, data managers, public health analysts, care service analysts, statisticians, informaticians, social scientists, health economists, health service researchers and communications experts. ​ Diameter of Trust: A regionally based population of 3-5million: large enough for economy of scale and small enough for a conversation with professionals and citizens about data sharing and change. ​ Electronic Patient Record (EPR): A platform or series of software applications which bring together key clinical and administrative data of a health service in a digital format in one place. ​ Learning Health System: Learning health systems (LHS) are healthcare systems in which knowledge generation processes are embedded in daily practice to produce continual improve in care. ​ Medical Interoperability Gateway: A computer system that enables the sharing of specified datasets of patient information between healthcare providers. ​ Trustworthy Research Environment: A secure platform to analyse data which meets the needs of the data owners, citizens, and researchers and satisfies common data standards, information governance and legal requirements for the storage and use of data.