The ORCHID project Dr Ian Gaywood, NUH Dr Ira Pande, NUH Professor John Chelsom, City University London

So much information……so little use Clinical care generates enormous amounts of information which is difficult to use when caring for the individual and impossible to use for any secondary purpose

The origins of ORCHID Better organised information has the potential to provide an enormously valuable resource but must be achieved without additional onerous burden at the clinical coalface The greatest impediment to extended uses of clinical records, including research, is not lack of data. It is lack of useable data It should be possible to organise data in ways which allow any plausible question to be answered

Stratified medicine Treatment decisions in all but the simplest conditions increasingly rely on knowledge of the patients disease phenotype in several domains Current methods of gathering and organising data dont place information in its correct context The relationships among pieces of information are at least as important as the information itself. It is no longer enough to simply name the beast

What clinicians want …. A way of organising data which: –Identifies patient phenotypes to any degree of detail –Produces untainted cohorts –Is multidisciplinary –Can include or exclude individual disease characteristics –Can include or exclude treatment details –Records and assesses outcomes –Can be searched in real time –Maps to existing coding systems

The ORCHID information model The two central tools of ORCHID are hierarchies and core data sets Together they provide a rich data architecture which can be applied to all data sets across all specialties ORCHID hierarchies cross-map to existing coding systems but overcame many of their limitations ORCHID hierarchies can be rapidly amended to reflect changes in knowledge and understanding without compromising the value of existing data Existing data sets can be embedded in ORCHID hierarchies and will inherit the richness of those structures

An ORCHID hierarchy Rheumatoid arthritis Rheumatoid arthritis - seropositive Rheumatoid arthritis - seronegative Rheumatoid arthritis - NOS Inflammatory arthritis Autoimmune disease Bespoke cohort SLE, PBC etc Psoriatic arthropathy Other conditions of interest

An ORCHID hierarchy

Core data sets ORCHID hierarchies place individual diseases, events etc in their correct relationships with other entities They do not capture the finer details of complex diseases which say something about subtype, severity, prognosis, treatment choices Core data sets capture these data items in a searchable form and provide a very detailed patient phenotype Can be either static or dynamic

An ORCHID Core Data Set

ICD-10 and patient phenotyping Requires separate codes for each manifestation Contains misclassifications –Adult Stills disease as type of rheumatoid arthritis Contains detailed codes of no clinical value –M Rheumatoid arthritis of right wrist with involvement of other organs and systems Does not reflect recent developments

SNOMED and patient phenotyping SNOMED contains almost all of the codes required to capture diagnostic data to the required level But…. It also contains a very large number of redundant codes, duplications and non-existent entities Coding detailed phenotypes requires the use of multiple codes – usually one code for each disease manifestation Clinicians should agree a subset of SNOMED with careful moderation of additions and amendments

Implemented using Open Health Informatics principles Open standards Open source software Open systems interfaces Open development processes Builds upon work in the Open Health Informatics research programme at City University Maximises the potential for reuse and wider roll out Implementation

ORCHID Architecture Standards based Ontology driven Clinician led

ORCHID Platform Open source Standards based Enterprise Java No compiled code

Deployment of ORCHID A web based application with a common look and feel across specialties but specialty and disease specific forms and summaries Linked to Trust information systems for automatic download of demographics, laboratory data…. Custom search engine allowing any finding within the ORCHID ontology to be used as a search term Can be deployed in modular form with all modules moderated for consistency allowing easy combining of modules and sharing of data among modules Moderated updates to take account of new knowledge, terminologies and classifications

Uses of ORCHID Routine clinical care Automated HES / SUS reporting Feasibility testing – research ideas, trial design Phenotype pattern analysis Registry data including possibility of cross-registry data sharing Generation of combined primary and secondary care data sets